Part II: Managing Confidentiality in Work with Adults
In this newsletter we return to the issue of a therapist sharing confidential information from treatment with involved others, including family and friends. We begin with the assumption that the therapist has obtained a release of information to talk with the other professionals and family members involved in the case. Nonetheless it is common for a therapist to find her or himself in the difficult situation of not being certain of the therapeutic impact of giving out this kind of information.
In Part I of this article, we introduced Ken. He was 16 and the clinical dilemma had to do with how much of what his parents and I (Steve Frankel) talked about should be shared with Ken, as well as how much of my conversations with Ken I should reveal to the parents. My quandary in that example had to do with Ken’s insistence that our conversations be entirely private even when Ken’s personal choices became concerning. In this situation, Ken was beginning to hang around with a questionable crowd and was starting to use drugs. As expected, Ken threatened to close down if I spoke to his parents about this issue. Nonetheless, because Ken was 16, I had free rein in this case and decided to talk to Ken’s parents, asking them to keep that conversation private. The decision was clinically risky, requiring judgment about Ken’s welfare and the parent’s reliability. Risks on both sides.
What about adults? How to deal with pressures to collaborate in those cases. Therapists often get pushed to share treatment data. Public agencies and insurance companies insist on personal information. Families or even friends who are concerned call. The simplest way to handle these situations is, of course, to maintain strict confidentiality, even if you, as the therapist, have permission to talk to the other people involved. Perhaps that’s usually the best thing to do with insurance companies, but what about family and friends?
Linda’s case is instructive in this regard:
When I met Linda, age 67, the wear and tear caused by her medical and personal situation was striking. Once quite beautiful, she had been afflicted with disfiguring scleroderma for fifteen years. Scleroderma is an autoimmune disease causing unsightly lesions of the skin and eventually internal organs. Her originally slow moving cutaneous lesions were now becoming infected, making her arms, fingers, feet, and now her face look hideous. As a result of the scleroderma and arthritic hip degeneration her ambulation was severely restricted, making it necessary to use an electric vehicle to get around. Her esophagus had also been affected by the scleroderma creating difficulty swallowing, severe gastrointestinal reflux (heartburn), and making tube feedings necessary. She also had started to develop some difficulty breathing, an ominous sign of lung involvement. Add to this picture the grinding depression that afflicted Linda since her husband left her a year earlier. [Note: Linda’s scleroderma, diagnosed fifteen years earlier was classified as “limited cutaneous scleroderma.” Over time systemic involvement became obvious, the disease affecting Linda’s gastrointestinal tract and eventually her lungs. Since the are no treatments for scleroderma itself, each area of involvement had to be managed separately.]
Nonetheless Linda managed. True, she limited her social contacts and now spent much of her time watching TV. But, her mind was sharp and her attitude matter-of-fact. She was complex and simple at the same time. The way North Dakota born Linda put it was, “This is the way things are and I’ll do my life now in the best way I know how. I realize that I will die within months, or, at best a few years, and that’s OK with me. No need to whine.” Or, at least that’s how it was until her son and daughter-in-law became involved. They contacted me saying that they needed help for Linda, adding that she was “indulging herself” and required a “good shove from a psychiatrist to get back on her feet.” Everyone had signed release forms and so there were no formal strictures preventing me from communicating with any of these people.
Linda’s son handled her finances and, as happens so often when concerned family members are involved, once I began to work with Linda, he and his wife progressively insisted on controlling her treatment. Linda’s reaction to their coercion was to withdraw, become less communicative, and spend less and less time with her grandchildren.
In response to Linda’s withdrawal the son and daughter-in-law were unrelenting in the pressure they put on her to conform. Inevitably, that pressure shifted to me. To “protect” her health I “needed” to “tell” Linda what to do, how to take care of herself. Linda’s failings quickly became mine, complaints escalating and my rapport with Linda increasingly threatened. “Get Linda to conform, Dr. F., or you’re dust,” was the implicit message. The problem at this point was that I had become Linda’s lifeline.
So, what to do here about the wishes and sensitivities of the key people involved in this case as they conflicted with my clinical judgment? In fact, this line of reasoning raises the question about who or what I was treating. The truth is that I had become responsible for assuaging the son’s and daughter in law’s anxiety and containing their related need for control over Linda’s life. In contrast, I was Linda’s therapist, in this case responsible for assisting her with an acceptable life ending.
Let’s make an unlikely comparison. Is Linda’s situation so different from Ken’s? True, Ken was 16 and Linda 67. What a stretch. But, in both cases family members were complicating their loved one’s lives, and, in both cases, these people felt they were essential to that person’s well being. In both situations the family insisted that I follow their lead. What choices did I (or you as a therapist) have? And, most particularly, could I afford to insist on having almost no communication with the family in either case?
In fact, therapists often feel compelled to do just that, and understandably so. In part taking that stance simplifies the decision making process, minimizing the subjectivity associated with clinical judgment. But, imagine the next step in these treatment sequences in that case: the family is spared information about Ken’s drug use and his mother discovers his coveted stash of drugs under his bed, Linda’s son’s and daughter in law’s interference continues unabated and Linda clams up even further refusing to talk to anyone.
Which way to go? Of course, it’s your choice. If you do it in the way least likely to provoke a controversy about boundary violation you don’t share much of what you talk to Ken about with his parents and vice versa. With Linda you maintain strict limits, share almost nothing with family, and essentially treat only Linda.
We are arguing for what we believe is a more realistic and flexible treatment approach than is implicit in either alternative, one evolved according to the clinical requirements of the case. In Ken’s situation, as described in the last newsletter, I checked in with his parents frequently, sometimes sharing what Ken and I talked about, often admonishing them that it was safe and judicious for them to back off. Diane Engelman did a psychological evaluation that confirmed my speculations. Linda and I evolved a ”strategy,” with me talking and meeting with her son and daughter-in-law at least once a month. To assuage their doubts about the legitimacy of Linda’s disability we obtained a medical and psychological evaluation. I shared just enough with them about my conversations with Linda to defuse their intense curiosity. Linda agreed that this was the way to go and worked along with me at every point.
Our position is that clinical judgment, as opposed to standard treatment guidelines, needs to prevail when decisions get challenging. In our next newsletter we return to the topic of clinical judgment, in that case as it allows the clinician to create and implement an effective treatment strategy.