Resuming Substance Abuse Navigation Services: A Personal and Professional Commitment

Addiction defies logic and understanding. It is a relentless, insidious force that can tear apart families and reshape lives. As I reflect on my journey and the path that led me to become a board-certified patient advocate (BCPA), I am reminded of the profound impact substance use disorder (SUD) has had on my family. This deeply personal experience initially drove me to specialize in SUD as a service of my practice.

After the unexpected death of my son from fentanyl poisoning in 2022, I stepped back from offering substance abuse navigation services to allow time for my family to grieve. Today, 28 months later, I am resuming these services through Patient Advocates of Southwest FL, renewed by a sense of strength and an acute awareness of the escalating crisis of drug overdoses.

The Crisis of Drug Overdoses

According to the CDC, over 107,000 people died from drug overdoses in 2021, with 75% of these deaths involving opioids. The rise in overdose deaths is largely driven by the proliferation of illicit fentanyl, a highly potent synthetic opioid. Opioids, especially synthetic ones, are the main drivers of drug overdose deaths, with 82.3% of opioid-related fatalities involving synthetic opioids.

Addiction as a Family Disease

Addiction doesn’t just affect the individual—it ripples through families. Estimates suggest that for every person struggling with addiction, five others are deeply impacted by their substance use. This was certainly true for my family. My son Jason’s addiction began at age 19, and after 23 years of battling substance use, he was 42 when he passed with the cause listed as fentanyl poisoning. His toxicology report showed a fatal level of fentanyl at 34 mg/ml. As a comparison, a lethal dose of fentanyl is 2mg/ml (DEA, 2021).

During Jason’s addiction, my husband, daughter, and I were all ensnared in his struggles. We each played a role in trying to help him. My husband became an investigator, tracking Jason when he went missing during his time in the Navy. My daughter, a psychology major, supported him by giving him a place to stay. As for me, I became his navigator and advocate, managing his hospitalizations, detoxes, and rehab stays.

Jason’s addiction cost him everything he loved—his daughter, his career, his health, and his relationships. He tried to quit many times, but every attempt was short-lived. Six years ago, following the release of one of his many incarcerations, we met for 15 minutes. It would be the last time I would see him.

Understanding Addiction as a Disease

Like many, I once believed addiction was a matter of willpower. But through my personal journey and professional conversations, I’ve come to understand that addiction fundamentally changes the brain. It is a disease, not a choice.

Dr. Andrew Proulx, a physician in long-term recovery, outlines some essential truths in his book Understanding and Helping an Addict (And Keeping Your Sanity):

· Addiction is biological, not a matter of morality or willpower.

· Recovery requires addressing the underlying causes of addiction.

· Every person is capable of lifelong recovery.

Despite years of fighting, Jason didn’t was not able to achieve long-term recovery. His most extended recovery lasted four years. During that time, he was a master finish carpenter and could parent his young daughter.

Navigating his addiction within the general healthcare system was particularly challenging. I frequently observed two concerning trends during his hospitalizations:

1. Medical professionals often have minimal training in addiction.

2. The stigma of substance abuse and addiction is pervasive, affecting the quality of care.

Advice for Families Supporting a Loved One with Addiction

Addiction is a profoundly isolating and overwhelming experience for families. Based on my experience, I offer the following tips for families navigating the healthcare and mental health systems while supporting a loved one with addiction:

· You are not alone: Seek help when needed. Many families share your experience.

· Separate yourself from the chaos: This allows you to provide support effectively.

· Everyone in the family suffers, not just the addict: Acknowledge the collective pain.

· Manage your stress: High stress impacts your ability to advocate. Designate someone to step in when you’re unable.

Tips for Advocating on Behalf of an Addict

Advocating for someone with addiction requires resilience:

· Be prepared: You may face resistance from your loved one and healthcare staff.

· Recognize mental health crises: People in crisis may not be able to comprehend treatment options.

· Communicate effectively: If you’re not getting clear answers, keep asking questions.

· Maintain politeness and respect: Advocacy doesn’t mean accepting the first option or opinion.

· Take notes: Document everything, especially at discharge.

· Seek permission: If your loved one is an adult, ask for permission to access their medical records.

· Get your papers: Obtain copies of the diagnosis, treatment plan, and discharge summary.

The Role of Professional Advocates in Substance Abuse Navigation

In today’s healthcare landscape, navigating substance use disorder (SUD) treatment and recovery can be overwhelming for both individuals struggling with addiction and their families. This challenge is magnified by the complexity of the healthcare and mental health systems, which often lack adequate support for addiction-related issues. As a Board-Certified Patient Advocate (BCPA), my role is to bridge this gap by offering professional guidance, navigation, and advocacy for clients and their families as they confront the difficulties of addiction.

1. Bridging Gaps in Care

One of the most significant challenges in substance abuse treatment is the fragmentation of care. Individuals often interact with multiple providers—detox centers, rehab facilities, therapists, and emergency rooms—without a clear, coordinated plan. This lack of continuity can lead to repeated hospitalizations, missed opportunities for recovery, and worsening health conditions.

A professional patient advocate ensures that all patient care team members are on the same page. As a central point of contact, I coordinate appointments, facilitate communication between providers, and ensure that every aspect of the client’s treatment is aligned with their goals. This consistency in care is essential for long-term recovery, as it minimizes the risk of conflicting treatments, medication errors, or gaps in care.

2. Enhancing Communication and Collaboration

Substance use disorder is often accompanied by stigma, which can create barriers to open communication between healthcare providers and families. I frequently observe medical professionals who are unsure of how to handle addiction or who underestimate the complexity of addiction treatment. Family members, meanwhile, are often left feeling confused, helpless, or excluded from critical decisions.

As a patient advocate, I facilitate effective communication between healthcare providers, patients, and their families. I help families ask the right questions, encourage healthcare teams to offer clearer explanations, and ensure the patient’s voice is heard. My role also includes keeping the family informed and helping them understand the treatment plan, potential challenges, and realistic outcomes. This level of communication is crucial to providing clarity and reducing anxiety for everyone involved.

3. Reinforcing Education and Empowerment

Substance abuse navigation involves more than just logistics—it’s about education and empowerment. Many families lack a complete understanding of the addiction treatment process, the complexities of recovery, or the options available for long-term care. This can lead to poor decision-making or missed opportunities for early intervention.

I provide families with education tailored to their specific situation, including:

· Understanding the biology of addiction and its impact on behavior.

· Exploring the various treatment options, from detox to inpatient rehabilitation to outpatient care.

· Providing guidance on the patient's legal rights, such as informed consent and the right to refuse treatment.

Through 1:1 education, I empower families and patients to make informed decisions about treatment options, recovery paths, and support systems. This is crucial in helping clients and their loved ones understand the challenges they face and the steps they need to take to achieve recovery.

4. Providing Emotional and Practical Support

The emotional toll of addiction is often overwhelming, not only for the individual but also for their family. Watching a loved one battle addiction can leave families feeling helpless, frustrated, and emotionally drained. My role as an advocate extends beyond just the medical side—I provide much-needed emotional support and practical guidance to help families navigate this difficult journey.

I help families manage their stress by offering coping strategies, encouraging self-care, and suggesting support groups for family members. For example, I may connect them with Al-Anon or Nar-Anon meetings, which are designed to support those affected by a loved one’s addiction. Additionally, I provide practical tools for organizing appointments, tracking medications, and following discharge plans.

5. Navigating Crisis Situations

Substance use disorder often involves periods of crisis, where the individual may be in immediate danger due to overdose, withdrawal, or mental health emergencies. These moments require rapid decision-making and an understanding of the healthcare system’s protocols for addiction-related crises.

In crises, I advocate for immediate and appropriate interventions, whether ensuring the patient receives adequate care in the ER, supporting involuntary holds when necessary, or facilitating transfers to specialized treatment centers. I also assist families in understanding their options in these critical moments, ensuring that decisions are made with the patient’s long-term recovery in mind.

6. Protecting Patient Rights

Individuals with substance use disorders often face discrimination, bias, and a lack of respect for their autonomy. Many healthcare providers, whether consciously or unconsciously, may treat individuals with addiction differently than other patients, leading to delays in care or substandard treatment. Protecting the patient’s rights in these situations is a core responsibility of an advocate.

As a patient advocate, I ensure that individuals struggling with addiction are treated with dignity and respect, and that their rights are upheld at every stage of care. This includes:

· Ensuring informed consent is obtained for all treatments.

· Advocating against unnecessary or harmful interventions.

· Facilitating access to medical records and ensuring patients understand their treatment plans.

7. Supporting Long-Term Recovery and Aftercare

Recovery from addiction is a long-term process, often requiring ongoing support even after formal treatment ends. Professional advocates are essential in ensuring patients and families are connected to aftercare services, including ongoing therapy, sober living arrangements, and support groups.

I help families establish a post-treatment care plan that addresses the patient's medical, emotional, and social needs. This often involves regular check-ins, identifying local resources, and ensuring the patient remains engaged in recovery. By supporting long-term recovery efforts, I aim to reduce the risk of relapse and foster a more sustainable recovery path.

By providing these services, professional advocates like myself can significantly improve outcomes for individuals struggling with substance use disorder. Through coordination, education, communication, and emotional support, I help families navigate the often overwhelming process of addiction treatment and recovery, ensuring that every step of the journey is taken with confidence and compassion.

Sources Cited:

Centers for Disease Control and Prevention (CDC). Drug Overdose Deaths in the U.S. Top 100,000 Annually. Available at: https://www.cdc.gov/nchs/pressroom/nchs_press_releases/2021/20211117.htm

Proulx, Andrew. Understanding and Helping an Addict (And Keeping Your Sanity).

National Institute on Drug Abuse (NIDA). Opioid Overdose Crisis. Available at: https://nida.nih.gov/research-topics/opioids/opioid-overdose-crisis

Disclaimer:

The services provided by Patient Advocates of Southwest FL, LLC, are designed to assist and empower individuals within the healthcare system. Our advice is not a substitute for professional medical treatment or diagnosis. Always consult with healthcare professionals regarding any medical condition or treatment options.