by C. Alec Pollard, Melanie VanDyke, Gary Mitchell, Heidi J. Pollard, and Gloria Mathis
Treatment refusal is a significant healthcare challenge, and one that often seems like a dead end in clinical work. In this lightly edited introduction to When a Loved One Won’t Seek Mental Health Treatment, the authors explore this issue from the perspective of the family members who are deeply impacted and yet have historically had little access to support. Though written for the family members directly, the excerpt holds invaluable insight for the clinicians who, by embracing a new approach, might be able to finally help these families.
Olivia paused longer than usual at the door. She didn’t want to go inside. She remembered how things used to be, when she looked forward to coming home, before her brother, Robert, changed. She shook her head, opened the door, and walked directly to the designated bathroom, where she undressed and stepped into the shower. Afterward, she put on specially cleaned clothes hung by the shower door.
In the kitchen, Olivia’s mother was decorating a birthday cake. It was Olivia’s fourteenth birthday. But there would be no big celebration today. No friends would be coming over, because Robert fears they’d bring contamination into the house. Olivia knows her brother has OCD, but she can’t help feeling resentful, wondering why she has to sacrifice so much because of his problem.
Olivia doesn’t have OCD, but she suffers from it nonetheless. And she’s not alone. The lives of countless family members are disrupted every day by a loved one’s mental illness—including the families we’ll be referring to throughout this book:
- Sara’s husband is severely depressed. He sleeps most of the day and doesn’t work, leaving Sara overwhelmed by the household and financial responsibilities her husband no longer assumes.
- Vivienne, Amy, and Andrew’s mother has a hoarding problem. They monitor her safety and spend countless hours cleaning up the clutter and hazardous conditions their mother lives in.
- Cathy’s teenage daughter, Caitlyn, has severe social anxiety. Every morning is a major battle, as Cathy tries to get her child to school, often late or not at all.
- Roy’s wife, Lynn, worries a lot about the many physical symptoms she experiences. Her quest to find a medical explanation has left Roy overwhelmed with medical bills and his two daughters resentful that “Mom’s not there for us like she used to be.”
- Rachel—whose husband, Sam, fears he’ll make a mistake that will cause harm to others—is often late to work and sometimes misses appointments altogether because so much of her time is spent reassuring her husband and helping him double-check things around the house.
Mental health is truly a family affair. Any disorder, any level of impairment, can disturb the family environment, and, in many cases, the impact is devastating. The struggles of one family member can compromise the physical, psychological, social, and financial stability of the entire family (Fekadu et al. 2019).
For most families, hope rests on the promise of treatment. And there’s good reason to have hope. Evidence-based psychotherapies, medication, or some combination of both have helped millions of individuals recapture their lives and those of their families as well. On top of that, promising new therapies are being investigated every day.
There’s just one problem. Even the best treatment doesn’t work if it’s never received.
In fact, at least half the people suffering from mental and emotional disorders don’t receive the help they need (Substance Abuse and Mental Health Services Administration 2022). Some lack access. But even when help is available, there are many who refuse treatment, promise to go but never do, or show up but never really participate. As you’ll learn, these folks are what we call recovery avoiders. We use this term to highlight the effect of a person’s behavior, not their intention. Recovery avoiders don’t set out to become disabled, nor do they intend to disrupt their family’s lives. Recovery avoidance simply describes a pattern of behavior that’s incompatible with recovery. There are real reasons your loved one avoids recovery—like misinformed beliefs, skill deficits, competing incentives, and deficiencies in motivation—but none involve a desire or decision to remain impaired.
Regardless of what’s behind the behavior, treatment refusal presents another layer of burden for families. Without hope of treatment, there’s little reason to expect things to improve. It’s natural to feel disheartened about the future when you’re in a situation like this—to feel resentment and anger when someone you love appears to be doing nothing about a problem that’s causing so much distress for everyone involved. And when family members feel it’s their responsibility to save their loved one, they endure the added burden of guilt over what they unjustifiably perceive as their own failure. Caring for someone who’s experiencing mental health difficulties can be hard enough, but it’s even harder when the person you love is avoiding recovery.
Whether it’s your son, daughter, partner, spouse, parent, or other family member, when a loved one avoids recovery and doesn’t do the things you believe could improve their quality of life, it’s hard not to lose hope. And when your well-being is tethered to someone else’s behavior, someone who’s unwilling or unable to change, you’re likely to feel trapped. That’s the fundamental dilemma of families grappling with treatment refusal. They’re stuck in what we call the family trap, because their hope for the future rests largely on another person’s behavior. And despite multiple failed attempts to change that person, families keep trying the same tactics, over and over, with little or nothing to show for it. They know it’s not working, but they don’t know what else to do. They’re stuck.
The Family’s Futile Quest for Help
Those stuck in the family trap need help, but there’s no one there to provide it. Some families reach out to a clinician, but unfortunately that doesn’t always go so well, like when Sara tried to get help for her depressed husband:
Sara: My husband’s severely depressed. He really needs help.
Dr. Typical: Is there a reason your husband didn’t call me himself?
Sara: He doesn’t believe treatment will help. He says it’s a waste of time. But he doesn’t leave the house and rarely gets out of bed.
Dr. Typical: Sounds like he’s depressed, all right, but there’s nothing I can do unless he wants help.
Sara: So that’s it? You won’t help us?
Dr. Typical: I’m sorry. But have your husband call me if he changes his mind.
Sadly, Sara’s experience is typical among people grappling with a loved one’s treatment refusal. And before we, as therapists ourselves, started working with families, we were much like Dr. Typical. After all, therapists know they’re not magicians. How can they treat a person who doesn’t want help? Even if Sara pressured her husband into therapy, working with a coerced patient is usually unpleasant and almost always unproductive. Still, there’s something Dr. Typical could’ve done to be more helpful. The mistake was not refusing to treat the person who didn’t want help. It was ignoring the person who did.
Rethinking Our Clinical Stance Toward Treatment Refusal
It never felt right to leave families in such an untenable position, but for a long time we simply didn’t realize there was anything else to be done. We thought our sole responsibility was to treat the person with a mental health problem, and if they weren’t receptive, there was no other option. Sure, we routinely included families in treatment sessions, but the identified patient was present, and their disorder was the primary focus. It never occurred to us to conduct therapy without “the patient,” instead focusing on the rest of the family. We were as stuck in our way of thinking as those families were stuck in recovery avoidance.
Eventually, our view of the problem changed. Families taught us how to understand their dilemma. They shared their daily struggles, how they felt abandoned by health care professionals and blamed for their loved one’s failure to recover. We realized the magnitude of disruption so many families experience. If our job is to treat mental illness, shouldn’t that include all who suffer? Other family members were struggling; they deserved our help too. At the very least, we could teach families how to lessen the impact of recovery avoidance on their own lives.
We also recognized that our knowledge of motivation was being used only to decide who not to help. Like most traditional therapists, we knew the futility of treating an individual who isn’t motivated to change. That part of our clinical judgment was reasonable. But we were ignoring those motivated family members. Unlike the treatment refuser, they wanted help.
Finally, we realized that certain family interactions are more than just ineffective. Sometimes they make things worse. Families don’t cause mental illness, but they can influence the course of a disorder. We knew from clinical observation, and subsequently from emerging research (Butzlaff and Hooley 1998), that certain family patterns are associated with more severe impairment and poorer response to treatment. By not providing guidance to these families, we were failing to give them the opportunity to create a family environment that better facilitates recovery.
As we adopted this new perspective, we began exploring ways to help families of treatment refusers. In the early 1990s there were no manuals or workbooks on this topic, but there were resources to draw on. We investigated how recovery avoidance was addressed in the field of alcohol and drug dependence, and we recognized some of those concepts and interventions might be helpful for the families we were seeing. We studied family systems theory, which helped us understand how families become locked into patterns of dysfunctional behavior, and how we might help unlock those patterns. We were also heavily influenced by cognitive behavior therapy (CBT), a type of psychotherapy successfully applied to a variety of problems involving anxiety, depression, guilt, and anger—the very emotions that can hinder families trying to escape the family trap. Additionally, CBT provides effective strategies to generate behavior change, a crucial ingredient for achieving family well-being.
The Family Well-Being Approach
The resulting method, based on three decades of work, is called the family well-being approach, which prioritizes the emotional health of the entire family.
Promoting family well-being is critical, because most people stuck in the family trap are trying to help their loved one under suboptimal conditions—while living in a distressed family environment. That’s a big reason they continue to struggle. It’s like trying to tread water with an anvil strapped to your back.
The family well-being approach seeks to remove the anvil. How? By offering family members strategies to reduce their own distress, stop accommodating problematic behavior, disrupt conflict cycles, and encourage recovery in their loved one. In doing so, it promises hope for many families struggling to escape the family trap of treatment refusal.
Join our 8 CE hour course, Navigating Treatment Refusal: A Family Systems-Informed Approach
This excerpt gives mental health professionals a good idea of what the family well-being consultation (FWBC) is and how it sets out to support family members of treatment refusers, a group whose distress, though very real, has largely been ignored by the healthcare system. In their live online training, Navigating Treatment Refusal, the authors teach FWBC from the clinician’s perspective, providing a clear set of steps to support well-being of the entire family and increase the likelihood of recovery behavior for their loved one.