September/October 2012 Issue

End-of-Life Care With Families of Addiction
By Lindsey Getz
Social Work Today
Vol. 12 No. 5 P. 28

End-of-life care is never easy, but professionals must be aware of some distinct challenges facing families of addiction.

No two families are alike when it comes to end-of-life care. And while every situation has its own challenges, end-of-life care can be further complicated by elements of past or current addiction within the family-under-care’s unit. Whether it’s the patient or a family member who has struggled with addiction, this fact changes the family dynamic and introduces some important considerations for the caregivers providing end-of-life treatment.

While there are many variables in these situations, one fact remains constant: A family systems approach to end-of-life care is preferable, not only for families of addiction but for any end-of-life care situation.

Social Work Today recently spoke with Suzanne Young Bushfield, PhD, MSW, and Brad DeFord, PhD, MDiv, coauthors of End-of-Life Care and Addiction: A Family Systems Approach, who wrote this book to fill a gap around an issue that really wasn’t being discussed. The authors found that people were talking about end-of-life care and talking about addiction, but they weren’t talking about what happens when those two situations come together. We asked Bushfield and DeFord to share some of the key points from their book and explain why a family systems approach is important as well as how social workers might better assist families of addiction who are receiving end-of-life care.

Stress on the Family Unit
A family systems approach is valuable in end-of-life care whether or not there is a history of addiction present, according to Bushfield and DeFord, and a death in that family will affect everyone. “When a family member is dying, the entire family is going through the experience as well,” Bushfield says. “That’s true of whether there was an addiction in the family or not. So in approaching this topic, we tried to illustrate how important the family system was to end-of-life care in general. But it’s incredibly important to any family where someone has had a problem with addiction either currently or historically.”

What’s important to recognize, Bushfield says, is that when someone in the family has had an addiction, that addiction has affected the family system. Because we don’t exist in a vacuum, our actions affect the rest of the family unit, and it changes the dynamic of those relationships. Bushfield and DeFord have coined the term “addiction emotional process” to talk about the dynamic that addicts and their families experience in dealing with addiction. “If a family member has participated in regular drinking or drug use, the rest of the family is affected by that,” Bushfield says. “In the same way, if they try to change their behavior, those changes affect the whole family as well.

 “What we’re seeing with end-of-life care for families of addiction is like an overlay,” Bushfield says. “Someone is dying and receiving end-of-life care and that affects the whole family. Now on top of that, add the issues related to that family dealing with addiction. You compound or even accelerate some of the issues that take place in this end-of-life care setting. It automatically becomes a more complex situation.”

To understand what happens within the family system when there is or was an addiction present, it helps to understand the process of addiction. “What happens in any family system is a tension of being your own person vs. belonging to a system. That automatically creates some anxiety,” DeFord says. “It’s how a family system manages that anxiety that matters. With addiction, that one person, the identified addict, chooses to bind that anxiety to an object [drugs, alcohol], and that has a paradoxical effect. To some extent, that choice stabilizes the anxiety. When the addict unbinds from the object, that anxiety will flow back into the system. In this way, the process of addiction is affecting the entire unit whether the addict is currently bound to the object of addiction or not.”

Bushfield says making a change in a family environment can be scary for the family, as it relates to something new, regardless of whether that change is positive. Typically when addicts are in recovery, many of the problems that may have led them to addiction in the first place remain or may even be exacerbated. “That’s why you hear terms like a ‘dry drunk’ or you might hear that a family member has ‘quit using drugs but is still causing problems in the family,’” Bushfield says. “The behaviors that surrounded the addiction have not changed. The only thing that’s changed is that they are no longer using the substance they once were.”

Shame and Family Secrets
Incorporating a terminal illness into this already challenging family structure complicates the situation by adding more anxiety. When the identified addict is dying and ultimately “absent by death,” it creates an entirely different family structure, stressing the family’s emotional process, DeFord says. “This challenges the anxiety level in the family even more,” he continues. “For one, the interface between society and the family is already a sensitive area. When someone has an addiction, it’s common for families to construct façades so that society views them like ‘everyone else.’ Most of the time people don’t go around talking about the fact that one of their family members is an addict. It’s typically a family secret.”

But the prospect of someone dying breaks the family out of the closed system they’ve created, DeFord says. Hospice staff and others must be welcomed into the family and are very likely told its secrets. “So in that way, a terminal diagnosis cracks the shell around the family and its façade,” DeFord notes. “That’s a huge added stress on many families with histories of addiction.”

It’s also important to recognize that families with a history of addiction are often dealing with added emotions, particularly shame. “Shame is a very powerful force in the emotional process for families of addiction,” Bushfield says. “And it’s particularly challenging in families of addiction where death is occurring. The individual might feel ashamed that they’re terminally ill, perhaps even responsible. They might feel they’ve failed the family. In the book, we use a fictional character named George who was a smoker his entire life. Now that he’s dying, intense feelings of shame come into play with not only his dying but also his lifelong addiction.”

DeFord emphasizes that “the presence of shame is an indicator of the spiritual dimensions of end-of-life care. Just as recovery from addiction is a spiritual process, so does addressing shame at the end of life and in addiction require a spiritual approach.”

Hitting Close to Home
In researching addiction and end-of-life care, the authors also came to realize that it was quite common for hospice team members to have a high incidence of addiction within their own family unit. This makes sense as many of those who go into a caregiving profession were inspired or driven by their own personal or family history of addiction. But it’s important to recognize that this changes the dynamic of the professional relationship.

“We found that there’s a high correlation between caregiving professionals and history of addiction,” DeFord says. “That means that you may have a hospice team member who is dealing with their own addiction emotional process coming together to provide end-of-life care for a family that is also dealing with addiction emotional process.”

According to the book, this means caregivers may be more likely to project some of their own thoughts and feelings on to the patient, the family, or the situation as a whole, and that can skew the way treatment is handled. It may even mean the issues of addiction are not recognized or addressed.

“To some degree, in their work many hospice professionals bring to bear their own personal family experiences,” Bushfield and DeFord wrote. “This is of particular importance when hospice teams care for families with histories of addiction because many hospice professionals are themselves likely to be from families with histories of addiction (Baldisseri, 2007; Corsino, Morrow, & Wallace, 1996; Katsavdakis, Gabbard, & Athey, 2004; Smith & Seymour, 1985). In our experience, this correspondence may lead to underidentification of the presence of addiction in families and, paradoxically, overreaction to some behaviors in those families. On one hand, there may be such familiarity with the addictive family’s dynamics that hospice professionals do not notice anything out of the ordinary. On the other hand, it becomes even more important for hospice professionals to have a comprehensive understanding of their own experience so that they can treat others objectively.”

“It’s something important for professionals to think about,” Bushfield adds. “Coming from a place where addiction was a part of life and now working with a family with a history of addiction may cause the professional to react in ways that were shaped by their own experience. The idea is to be observant, attentive, and cautious about yourself and your feelings. Pay attention to how you’re reacting to the problem if you’re coming to the situation with your own family history of addiction.”

Other Complications
It’s also important to recognize that issues may arise among families with a history of addiction in end-of-life care that wouldn’t arise among families without such a history. For one, the introduction of any number of regulated substances into the household can become a concern. “With end-of-life care, controlled substances are common since the goal is achieving comfort for the individual who is dying,” DeFord says. “But what does that mean for a family with a history of addiction? The family may say that the patient is or was an addict and that introducing controlled substances would jeopardize the patient’s ‘recovery.’ But that could mean they also don’t receive the right amount of medication to ease their suffering. That’s only one of many examples showing how addiction can skew end-of-life care.”

DeFord says end-of-life care for current or former drug abusers also can be challenging because of their tolerance for certain medication. “You have to consider the physiology of the addict’s tolerance level and the fact that it may be astoundingly high,” he says. “The amount of medication needed to truly ease that person’s pain might be much more than what’s needed for the average person. The physician prescribing that medication may find him- or herself trying to justify levels of medication that would otherwise be FDA suspect because that’s what it takes to provide adequate pain relief.”

Complications can arise if another family member is or was the addict. “Having drugs in the house may be a problem for others if they are a current or former addict and want to experiment,” DeFord says. “In that case, the hospice team needs to be very aware of exactly how much medication is being used and able to keep track of it.”

Bushfield says that in end-of-life care it’s often easy to get caught up in physical needs, as the main goal is to make the patient as comfortable as possible during this final part of his or her life. However, she adds that in all family units dealing with dying—and particularly those also dealing with addiction—there are a tremendous number of emotional and spiritual needs as well. “I would urge social workers to put the end-of-life care focus on emotional and spiritual needs as well as physical needs,” she says, “not only those of the patient but of the entire family.”

Lastly, Bushfield advises social workers to be observant and to take a step back from what’s happening within the family unit. Failing to do so makes it easy to start pointing out the person with the addiction as the “one with the problem” if the rest of the family has been doing so, Bushfield says. But she hopes that social workers can look at the family unit as a whole and remember that no one lives in a vacuum.

“And remember that while we can identify problems, it doesn’t necessarily mean we can change everything,” she adds. “Some families are very resistant to making changes, and families with histories of addiction can be especially difficult cases. As social workers, we have to guard against labeling them as ‘bad clients’ just because they didn’t do what we wanted. Remember that even in end-of-life care, things may not happen on the time schedule we prefer. Be respectful of that family’s time and, as a social worker, you’ll be less likely to get discouraged when change doesn’t happen immediately.”

Social workers, along with other members of the hospice interdisciplinary team, are wise to avoid both blaming and shaming.

— Lindsey Getz is a Royersford, PA-based freelance writer and frequent contributor to Social Work Today.