On Treatment Refusal
This entry contains a number of different approaches to encouraging our loved ones to enter treatment. Fruzzetti, Aguirre, the McLean webinar, and Hoffman relate specifically to BPD sufferers, while Jones, Almador, Deegan, and Komodor do not. All the approaches recognize how tremendously challenging this process can be and, for the most part, focus on the empathy and validation family members can provide, instead of coercion. The assumption being that coercion tends to backfire and even when successful does not necessarily promote longterm compliance or dedication to the recovery process.
Alan Fruzzetti, PhD (Program Director, 3East Boys Intensive Program), in his webinar entitled “BPD in Boys and Men” gave the following advice to parents who asked about a majority age child who refuses treatment (51-56 minutes):
Q: A late adolescent (of the age of majority) child refuses intensive therapy, threatens suicide when it is suggested, arguing that no therapy has worked before, in fact, it has only made the situation worse (AF: this makes sense it terms of substance abuse programs: they tell the patient that he or she is not trying very hard, to just kick the habit, and focus on setting boundaries and being punitive); furthermore, other people and school may not believe this is actually BPD and not just antisocial behavior.
A: This is a sad and difficult situation for a parent since nothing could be harder than seeing your child suffering and not being able to get them into treatment.
[1] You need a program to support yourselves and take care of yourselves because you deserve a life and otherwise you will not have the strength to take care of your child.
[2] Super-validate: the mental health system is way worse than imperfect [AF is talking about the situation in America!]; to be in a treatment program that is a mismatch is horrific; depending on where you live there may be very few or even no appropriate resources. Have this super-validating dialogue with your child right away and keep it up.
[3] When this foundation has been established for your relationship, look together for a treatment that would be a match for him. Make it clear that you are looking for a specific treatment and that you will not send him to a mismatched treatment. See if there is a professional near you who uses one of the three evidence-based treatments for BPD (and is willing to take male BPD seriously, if the sufferer is male). Suggest to your daughter/son that he see this person even once. Then it will be the professional’s job to persuade him to continue. You are not alone in this.
Editor’s Comment: As I mentioned, Family Connections can really offer the support and teach family members how to validate (steps one and two). In many cases step three will be hard to accomplish, but it is crucial to maintain the validating relationship. It is also not uncommon for sufferers to recognize the strides their family members have made at Family Connections and then be willing to enter a similar program themselves. Sometimes this is because they recognize the effort made by others (“if they are fixing themselves then so can I”) and sometimes this is because their family members’ increased effectiveness convinces them that there might be something to this therapeutic model.
Another perspective offered on BPD sufferers is offered by Dr. Blaise Aguirre, MD (Medical Director, 3East Girls Intensive and Step-Down Programs) in a “Question and Answer Session,” held at Family Perspectives on Borderline Personality Disorder: The Basics and Beyond – Atlanta, GA – November 4, 2011.
Motivation Issues are a part of getting a patient into and maintaining any treatment (compliance in taking medications in cancer, diabetes, and hypertension treatment and in other mental illnesses). This is not just a BPD issue, an illness where sufferers are predisposed to feel that the world is against them or deny that they have no problem. DBT Builds in Motivators Right from the Beginning: Have them own the problem (“where is the end of the misery in your plan,” and offer them hope that this therapy can help them deal with it; Motivational Interviewing is crucial to this process)
A Family Perspective on the Issue: “A Family Member’s Perspective on Borderline Personality Disorder and Improving Relationships,” McLean Hospital Borderline Personality Disorder Family and Consumer Education Initiative, Originally aired Monday, July 17, 2017.
Q: What are some strategies to get sufferers to go to DBT groups, if they know something is not right, but only want to go to group or individual therapy?
A: It is very individual, so you can’t really give an answer. If you state it judgmentally, “you really should go…” that will not be effective. If you validate how difficult it is for them to go to therapy and how much you respect them for trying even though it is imperfect and then suggest another possible approach that might be more successful…. this may be more effective. You can also validate how hard it is to start with someone new and tell them all your deepest darkest secrets. Plant seeds until they are ready for it.
Perry Hoffman, the founding president of the National Education Alliance for Borderline Personality Disorder (NEA-BPD), offers the following sobering advice:
“The best way of approaching this problem from my perspective is for one to accept that you cannot get someone into treatment. Timing is important as to when someone might be “open” to hearing the idea. But the bottom line is to free families of feeling guilty, and to understand that they are not so powerful to effect that goal. Along that line, relatives need to get help and support for themselves as they watch their loved one in the throes of the illness.”
Editor’s Comment: While it is hard to accept Dr. Hoffman’s advice because we are in so much pain and we desperately want to change the sufferer’s behavior and mood, accepting this reality can be the first necessary step in helping both ourselves and, ultimately, our loved one.
Helpful phrases to use in order to encourage your loved one to accept treatment:
Gently tell your daughter, “You don’t deserve to suffer this way.”
Speaker on Dais in Question and Answer Session: “I’m worried [and implicitly, I could be wrong], and it’s really up to you. I just have this worry” and “You seem so unhappy [don’t say depressed]”….
For a slightly different take on the issue that is not BPD-specific, see Mike Jones, “How To Encourage Someone To See A Therapist,” NAMI.org, November 20, 2017.
See too, NAMI FAQ, which while not BPD-specific may be helpful in certain cases. Dr. Amador’s research focuses on patients suffering from psychosis (in particular, Schizophrenia):
“Helping a loved one see the need for treatment and working with them to locate treatment services can sometimes be difficult. A book that many families and friends have found helpful is I Am Not Sick, I Don’t Need Help by Xavier Amador, Ph.D. In the book, Dr. Amador teaches a communication strategy known as LEAP. This approach teaches a person how to help someone see the need for treatment, partner with them to identify options and support ongoing recovery. The LEAP Institute offers additional resources and advice on how to improve communication between you and your loved one…..
It may also be important to have an honest discussion about how their treatment decisions affect your relationship with them. Set clear expectations and discuss the possible outcomes of both accepting and not accepting treatment. Some mental health professionals believe a related condition, anosognosia, or a person’s inability to recognize their own mental illness contributes to an unwillingness to take medication or participate in treatment. When a person has no insight into their condition, it can create a difficult situation where they may not believe that treatment is necessary.”
Another approach is offered by Patricia Deegan, PsyD, who developed the Recovery approach:
There is no easy answer to those who are leery about treatment because of risks and unwanted side effects.
- Often in the case of a first psychosis, the question start with is what matters to you (you want to be a rapper, an athlete, a parent…), let’s figure out a way to help get you there.
- We lose people really fast when we start telling them they are sick, they broken, they need treatment.
- We ask for their personal motivations for treatment – What in your current situation is getting in the way of what you want to accomplish? How can we get you to what matters to you?
- Don’t harass them, just keep asking once every day, and if they say no that is fine (like Pat’s grandmother asking her if she wanted to go shopping). Keep offering them opportunities.
(The Common Ground Program – Pat Deegan in Israel https://www.youtube.com/watch?v=Hj_S4ILcm6U [1:07-1:10])
Dr. Mark Komrad, M.D., presents another stance in his book: ‘You Need Help!’ A Step-by-Step Plan to Convince a Loved One to Get Counseling. The book is dedicated to convincing a loved one to get a state of the art evaluation. Following this, Dr. Komrad advises buying another book on how to help someone with a particular illness or disorder. For his lecture on the topic, see How to Convince A Troubled Loved-One to Get Mental Health Treatment
Bottomline, it is not easy to persuade our loved ones to enter treatment. Timing and language are very important, but even the best timing and most carefully chosen wording in the world may not do the trick. Helplessly watching our loved ones suffer is so hard, but the truth is that no one can really be forced to enter treatment (and even if we can coerce a loved one into treatment if they do not buy into it they can easily undermine its success). Sometimes, as Perry Hoffman noted above, we just have to accept the painful reality of treatment refusal, confront our feelings of helplessness, and take care of ourselves. At the same time, we may certainly remain hopeful that choosing to “put the oxygen masks on ourselves first” is the first step in our loved ones’ recovery.