TIPS and TOPICS from David Mee-Lee, M.D.
Volume 8, No. 5
In this issue
-SAVVY: Psychiatric diagnosis gone wild!
-SKILLS: Working with People, not diagnoses
-SOUL: My favorite meals
-STUMP THE SHRINK: Substance Abuse /Dependence-one size fits all?
-SHARING SOLUTIONS: Readers share their experiences with aging
-Until Next Time
Welcome to the September edition of TIPS and TOPICS.
A number of readers were prompted by the July/August edition to share their experiences with aging parents. Excerpts of their comments and wisdom appear in the occasional section-SHARING SOLUTIONS.
When a prominent psychiatrist in the American Psychiatric Association (APA) blogs about ‘Psychiatric Diagnosis Gone Wild: The “Epidemic” Of Childhood Bipolar Disorder’, it catches your attention. This is especially notable since Allen Frances, MD was past chair of the DSM-IV Task Force and of the Department of Psychiatry at Duke University School of Medicine, Durham, NC. Currently he is Professor Emeritus at Duke University.
– Beware of diagnostic fads
A press release from the National Institute of Mental Health (NMIH) in September 2007 stated that “the number of visits to a doctor’s office that resulted in a diagnosis of bipolar disorder in children and adolescents increased by 40 times over the last decade. Over the same time period, the number of visits by adults resulting in a bipolar disorder diagnosis almost doubled.” The cause of these increases is unclear. Medication prescription patterns for the two groups were similar. The study was published in the September 2007 issue of the Archives of General Psychiatry.
Dr. Frances wrote: “To become a fad, a psychiatric diagnosis requires 3 preconditions”:
A. A pressing need
B. An engaging story
C. Influential prophets
A. Here’s what he said (in italics) was the “pressing need”:
- Disturbed and disturbing kids are very often encountered in clinical, school, and correctional settings. They suffer and cause suffering to those around them–making themselves noticeable to families, doctors, and teachers. Everyone feels enormous pressure to do something. Previous diagnoses (especially conduct or oppositional disorder) provided little hope and no call to action. In contrast, a diagnosis of childhood Bipolar Disorder creates a justification for medication and for expanded school services. The medications have broad and nonspecific effects that are often helpful in reducing anger, even if the diagnosis is inaccurate.
B. Here’s what he said (in italics) was the “engaging story”:
- The “epidemic” of childhood Bipolar Disorder fed off the engaging storyline that it:
1. Is extremely common
2. Was previously greatly under-diagnosed
3, Presents differently in children because of developmental factors
4. Can explain the variety of childhood emotional dysregulation
5. Has diverse presenting symptoms (eg, irritability, anger, agitation, aggression, distractibility, hyperactivity, and conduct problems)
C. Here’s what he said (in italics) was the “influential prophets”:
- The prophets were “thought leading” researchers who encouraged child psychiatrists to ignore the standard bipolar criteria and instead to make the diagnosis in a free-form, over-inclusive way. Then enter the pharmaceutical industry– not very good at discovering new drugs, but extremely adept at finding new markets for existing ones. The expanded reach of childhood Bipolar Disorder created an inviting target. The bandwagon was further advanced by advocacy groups, the media, the internet, and numerous books aimed at suffering parents.
This is not a diatribe about Bipolar Disorder, however it is quite easy to put a diagnostic label on people. It is much harder to erase that label from the patient/client, from the patient/client’s identity and from other peoples’ view of that person. Dr. Frances alerts us about the dangers of over-diagnosing childhood Bipolar Disorder. But as you consider the following points that I quote him in italics, there is much food for thought about any diagnosis we place upon a person.
- The massive over-diagnosis of childhood bipolar disorder comes with large costs. Inappropriately-diagnosed children are often treated with medications that are unnecessary and potentially quite harmful (especially those that cause rapid and substantial weight gain, increasing the risk of diabetes, and possibly reducing life span).
- Other more specific causes of irritability may be missed. For example, Attention Deficit Disorder often presents with an irritability that responds best to stimulants, but these may be withheld in the face of an incorrect bipolar diagnosis. Substance abuse should always be the first thought for irritable teenagers.
- The label Bipolar Disorder also carries considerable stigma, implying that the child will have a lifelong illness requiring lifetime treatment. Many causes of temper outbursts are much shorter lived and amenable to time-limited treatment.
- The diagnosis can distort a person’s life narrative, cutting off hopes of otherwise achievable ambitions. People worry about getting married, having children, or taking on stressful ambitions, jobs, or work challenges.
- It may become more difficult to get insurance. An incorrect diagnosis of bipolar disorder may reduce one’s sense of personal responsibility for, and control over, undesirable behavior. People sometimes use the diagnosis as an excuse for interpersonal or legal problems.
- The “epidemic” of childhood Bipolar Disorder has created a public health dilemma. Based on much hype and very little scientific evidence, a huge and heterogeneous cohort of explosive kids has received powerful treatments that can sometimes do much good, but sometimes do much harm. How do we tame the fad? Merely rewriting DSM5 cannot cure what has become the deeply ingrained habit of over-diagnosing and over-treating childhood Bipolar Disorder
1. National Institute of Mental Health (NIMH) Press Release · September 03, 2007
“Rates of Bipolar Diagnosis in Youth Rapidly Climbing, Treatment Patterns Similar to Adults”
2. Archives Gen Psychiatry. 2007;64(9):1032-1039: “National Trends in the Outpatient Diagnosis and Treatment of Bipolar Disorder in Youth”
Carmen Moreno, MD; Gonzalo Laje, MD; Carlos Blanco, MD, PhD; Huiping Jiang, PhD;
Andrew B. Schmidt, CSW; Mark Olfson, MD, MPH
3. Psychiatric Times. April 8, 2010 – “Psychiatric Diagnosis Gone Wild: The “Epidemic” of Childhood Bipolar Disorder”
Allen Frances, MD
If you are in a position to actually designate and document diagnoses, in many ways this is a sacred trust we should not take lightly, especially psychiatric diagnoses.
If you are not officially qualified to decide the diagnosis or are the recipient of a diagnosis, there are still important attitude and treatment implications to consider here.
1. People are not their diagnostic label
Recently, I was interviewing a client who is on long-standing disability for a variety of diagnoses including Schizoaffective Disorder, Borderline Personality Disorder, and Polysubstance Dependence (methamphetamine, cocaine and marijuana). Much of the conversation revolved around these ‘topics’: his diagnoses; his understanding of the dynamics about his self-defeating patterns of substance use; the negative effects of substance use on his psychiatric symptoms; how he was spending so much time recycling cans to raise funds for his daily heavy marijuana use; how despite his intent to stop his methamphetamine and crack use, he nevertheless felt that marijuana helped his psychiatric stability.
I was a bit slow to shift the focus away from his litany of pathology and eventually caught myself. “What brings you joy?” I finally asked. Quickly he answered “running”. He prided himself on being fairly physically fit and in the past has done some distance running. He even talked about wanting to become a fitness trainer. Now we were onto conversation which did not define him by his psychiatric diagnoses.
This led to our highlighting a few issues which would directly pertain to becoming a fitness trainer:
- Couldn’t he make much more money as a trainer, than recycling aluminum cans?
- Why not restart his daily running routine instead of spending so much time hustling recycling cans?
- Would daily marijuana use help or hinder his fitness and competence as a trainer?
- What would it take to become a trainer? What would be some first steps? Would remaining homeless living on the streets help or hinder his becoming a trainer?
Increasingly I avoid thinking of clients as alcoholics, schizophrenics, borderlines, obsessive compulsives, sociopaths, narcissists, drug addicts, bipolar or manic depressives. Rather they are a father, mother, brother, sister, daughter, son, cousin or grandparent who happens to have alcohol dependence, schizophrenic disorder, borderline personality issues, or who suffers from obsessive-compulsive disorder or bipolar disorder.
I know we often encourage people new to AA to self-identify as “Hi, I’m Joe and I’m an alcoholic”. But if that identity remains their identity and their sense of self to the exclusion of growing beyond the grips of alcohol dependence over their life, then we have failed them. We have contributed to their becoming their diagnostic label instead of embracing wellness, health and recovery.
2. Don’t deliver diagnosis-driven, program-based treatment and services
Whenever I visit the exhibit hall of an addiction conference, I ask the program representatives the daily rate of their residential program or the daily rate of their intensive outpatient program. Many times the answer that comes back is something like: “The thirty day program is $20,000; and the extended care program is $35,000.” I then clarify my question and ask again about the daily rate since not everyone may need the 28 or 30 days. The answer: “I’m not sure what the daily rate would be, as we want everyone to stay for the whole program.”
Recently, I asked the same question in an exhibit hall; happily, I was quoted a daily rate more than the program rate. In the 1980’s I was the Director of a hospital-based addiction program. It was a 21 day inpatient program. Therefore if your diagnosis was Substance Abuse or Dependence, you were admitted to the 21 day program.
Here are some tips to consider about diagnosis-driven, program-based treatment as opposed to person-centered services:
- “How long do I have to be here?” – Instead of quoting a set number of program weeks or sessions, say something like: “Well it depends on what you are wanting to work on here – total abstinence? cutting back or whether you even think you have an addiction problem or not? Then we have to do an assessment and see what we would recommend. Then you and I have to collaborate and agree on a service plan. Then we have to work hard together on that plan and see if it works. So I don’t really know how long that will take. It depends on things like: Are you working hard and showing up literally and figuratively? Or are you just sitting in sessions and not involved? It depends on whether the plan we agree on is the best and whether it is working.”
- Diagnosis is a necessary but insufficient determinant of treatment – You want to know if a person has an addiction problem so that you know if they even need addiction services. Or whether they have a mental health or physical health diagnosis so you know if they need mental and/or physical health services. Or whether they have an addiction and mental health problem so you know if they need co-occurring disorders treatment. But the diagnosis alone does not determine the treatment and certainly does not define the level of care and the length of stay. (Think about how you treat the diagnoses of Schizophrenic Disorder, Bipolar Disorder, Major Depression, Asthma, Diabetes and Hypertension.There are no 28 day schizophrenic disorder programs or 3 week hypertension intensive outpatient programs.)
- Focus on improved function and outcome, not graduation and program completion – What counts in treatment is not whether the client can list off the criteria of their diagnosis, but whether they are being attracted into taking responsibility for their thoughts, behavior and choices in life. A thorough understanding of a person’s diagnosis is of little value if their life is not improving and if they are not experiencing improved function, joy and peace. As Dr. Frances said “The diagnosis can distort a person’s life narrative, cutting off hopes of otherwise achievable ambitions.”
- So does all this mean that it is bad to give and use diagnoses? – If I am not well and life is not good, I certainly would want to understand if there is a diagnosis which explains my dysphoria and what can be done about it. However… If the diagnosis now controls and disempowers me; if it reduces me to comply with others’ regulations and program limits; if it limits my potential to embrace as much joy and serenity as possible, then the diagnosis is a disservice. The problem is not making a diagnosis. It is in misusing it to stifle creativity and person-centered and person-directed care; to push compliance with treatment instead of collaboration for positive outcomes and joyful recovery.
I’ve been to a lot of fancy (and expensive) restaurants in my life. Not that I dine out all the time. But when you frequently travel as I do, the opportunities arise to see some exquisite décor and experience service you don’t get at McDonalds. The other night, three of us went to dinner; three waiters descended on our table. They laid down our meals in front of us with each plate crowned by those silver domes concealing the delicacy beneath. At the precise moment, in perfect synchronization with a flair and flurry, they all lifted high the plate domes to reveal our menu choices. No customary carrying out of the plates from the kitchen and losing their heat on the long journey to our table at this restaurant. No plonking it down in front of you with a perfunctory “Enjoy or Bon appétit” here.
Recently while in Boston where we lived for 17 years, I craved going to Legal Seafoods. I have to have my Boston-specific dining experience I cannot replicate in other places – not for lack of trying. As I am enjoying my Caesar salad (no croutons, large shaved slivers of Parmesan cheese, and yes, the anchovies please -only about 20% of customers want the anchovies, the waiter informed me) I am thinking: “life is good”. But the salad was only a third of the experience.
What really floats my boat is the bowl of fish chowder – not New England clam chowder – fish chowder. It’s got to be fish chowder. Now maybe I’m not going to the right restaurants, but I just cannot find fish chowder anywhere in the country like Legal Seafood’s. I have trouble finding fish chowder, period. If I do, it never is the same. I even tried Legal Seafoods in Washington, DC and they didn’t even have fish chowder there. It was sacrilege!
The final third of this meal I can’t wait for are the dinner rolls. Not too crispy, not too soft – just right.
Second and third place dining experiences: These I can get any time in my current hometown of Davis, California. Plutos is where you can fashion a huge salad with seven choices from a wide variety of salad ingredients more plentiful than you could stock at home; all are fresh and ready to mix in with your Romaine lettuce and salad greens. Choose from any five relatively healthy salad dressing choices. Add a little chicken, beef or turkey if that appeals to you.
Number 3 is a slice of vegetarian pizza from Village Bakery on Second Street in Davis. It rivals Regina’s Pizza in Boston….maybe even better. It’s been a long time since I’ve tasted pizza in Boston. Only Legal Seafoods for me.
So what’s the point of all this gastronomical sharing? Not quite sure, except that when I am enjoying these three meals, it really does bring a smile to my face and reminds me that life is good. It doesn’t have to cost a lot and it doesn’t have to have a silver dome decorating the dinner plate.
Enjoy and Bon appétit!
(The preceding was NOT a paid political announcement or paid endorsement)
STUMP THE SHRINK
I have a question for you that might make a good topic for one of your newsletters. I’ve discovered that there is a major disagreement among substance abuse professionals over the treatment of individuals diagnosed by DSM-IV criteria to have an abuse diagnosis. I frequently see treatment plans for these individuals that address relapse prevention and the need to develop a recovery lifestyle. Many Substance Use Disorders treatment centers and clinicians do not appear to treat individuals with an abuse diagnosis much differently than individuals with a dependence diagnosis. In fact, these abuse-diagnosed individuals appear to have about the same length of stay as individuals diagnosed with dependence. This doesn’t seem to fit an individualized, clinically-driven model. In fact, it doesn’t even fit a diagnosis-driven model.
Early in my career, we looked at abuse as a pattern of poor choices that could be altered if the individual so chose. We always looked at dependence as an illness that required a major life change in all or most areas to reduce or eliminate symptoms (recovery) for the remainder of that person’s life. I always used the second definition of relapse in the dictionary: “to fall back into illness after apparent recovery”. I realize that the word “relapse” could be used to mean a return to old behavior but I thought we were using the second definition as professionals dealing with the disease of dependency. It seems to me that a person diagnosed with abuse would require a very different treatment process with a length of stay based on individual need. I’d appreciate hearing your comments on my issue.
NorthCare Substance Abuse Coordinating Agency/Pathways
Thanks for your observations all of which I agree with. I have seen the same “one size fits all” for abuse versus dependence and other clinical presentations as well that would seem to clearly need an individualized plan. In fact in the Adult Patient Placement Criteria of the American Society of Addiction Medicine (ASAM), you can’t even get into residential level of care with just a Substance Abuse diagnosis. It has to be Substance Dependence.
This may be a moot point in DSM-5 where I think they will be disbanding the Abuse/Dependence dichotomy and focusing more on a range of severities as opposed to a distinct separate Abuse/Dependence diagnosis.
Hope all is well. Thanks for your comments.
There are many readers who have been touched by the issue of aging and caring for aging parents. I have excerpted those that spoke to me. Maybe they will speak to you as well.
Thank you for your attention to this issue. I have been a 24 hour a day caregiver for my mother with Alzheimer’s for 5 years prior to her recent admission into a skilled nursing facility. I say 24 hours a day even though I worked and had aids who cared for her while I was away, because I was “on call” all the time. In some ways, even though she is in a nursing home I am still “on call” and attending to the unfair reality that if I am there often she gets better care.
But what I wanted to add to your thoughts is this: Many times when I would tell people I cared for my mother with Alzheimer’s they expressed their admiration and/or concern for the effort this takes. Total strangers would thank me and want to give me hugs as though I had chosen to take this on and should be honored for some reason. This is not a challenge I chose. And while I could have placed her earlier, I didn’t. I didn’t because living with someone with Alzheimer’s can be a gift as well.
For all the mindfulness workshops I’ve attended for use in my career, nothing came close to the experience with my mother. She lives perpetually in the present. And if I am to communicate with her I must be in the present as well. I remember a recent visit in which we were sitting outside and my mother would comment on the beauty of the red flowers in front of us. I expressed agreement, that they were beautiful. And I would move on thinking about and commenting on different things. She would interrupt to point out the beauty of the red flowers. I again agreed and moved on. We repeated this many times. I am used to this so it was not frustrating, however after about the 10th time it occurred to me that perhaps she was seeing something in the red flowers that I hadn’t noticed and she drew my attention back to that because I had not been able to convey to her that I had fully appreciated the red flowers.
That brought about quite a shift in my thinking. I also learned how important the method of caring, the mechanics of caring make a difference. As she needed help dressing, I would attempt to put her arm in a sleeve and as I took her arm or hand to move it into her clothes, she would stiffen, and at times move in the exact opposite. Through trial and error I discovered that if I cupped my hand around hers, not holding, but matching my hand to hers and guided rather actively moving her hand, we have no problem. Not a concept that others have been able to understand. Such a small change but made all the difference. And I learned in a new way what the concept of “joining” is all about.
So while it is hard, it is also a gift. And she has and continues to teach me amazing things.
Judy in Connecticut
It is very timely because my father-in-law is now 99 heading fast for 100 and my mother-in-law is now 80. She is able to care for papa for now but perhaps not for long. We have had to face many of these issues and help them get their money, medical, care services, will, etc. set up. They waited quite a long time.
Also, when you talk about saying Goodbye, it’s difficult when the elderly parent, in this case, my father-in-law no longer seems to know or remember much. My husband has had to deal with a living father but one who was never really willing to share on a very personal level. Anyway, thanks for your TIPS and TOPICS today.
Thanks for the latest TNT on Elder Care. Having gone through this with both of my parents, and my wife with her parents, your thoughts and insights were much appreciated. Looking at our own mortality can be a daunting, sometimes scary experience, but a necessary one.
Your most recent newsletter has encouraged me to drive home and have a talk with my parents. I have attempted to do this in the past but, the ‘timing’ never seemed right. I don’t know that it ever will be ‘right’. My thoughts and prayers are with your family.
Thank you for another thoughtful newsletter, David. I lost my parents in the past few years and related to much of it.
There is of course no one size fits all, right way to go through parents’ aging and passing, or grieving. We have different experiences and different paths through this transition and our lives.
A few thoughts about saying goodbye – I think it is usually a good idea to:
· Tell them we love and appreciate them and thank them for being there for us the best they could…and/or think about what you may wish you would have said or done if you lost them today, and plan to say it/do it as soon as possible.
· Find serenity regarding their flaws and hurtful behaviors (if not done yet…may require support from friends, family, therapist, sponsor, religion, spirituality, philosophy, and/or self-help)
· Focus on positives and the unique connection
I liked your emphasis on doing our best to be helpful sons or daughters given the specifics of the situation. That informs everything, both because it is the right thing and because when we lose anyone, part of grieving is thinking about what we could have done differently. Right action – time together, phone calls, juggling other responsibilities, setting appropriate boundaries (especially if the parent is abusive), self-care so we can be our best – minimizes regrets.
I wanted to tell how “spot on” your newsletter was with regard to care giving an elderly parent. My mother just turned 93 in July and while she is declining in her body, her mind is still sharp as a tack. She finally agreed about a year ago upon returning from a long hospital stay after falling and cracking her head open, to hire someone local to take care of her. In the beginning, she stayed 24/7. Once she regained her strength mother cut her hours down to 9-1 and then she comes back at 7:00 and gets her ready for bed. We are SO grateful to have this wonderful, loving woman to care for mother and more importantly, mother is very fond of her.
Another thing that helped relieve our worry about her is that she finally agreed to have a chair lift put in. She absolutely refused to move her bedroom downstairs so we were terrified she was going to fall down the stairs so we’d been trying to get her to get a chair lift for about 5 years. She is quite the independent one and wants to do things in her own time! It can be frustrating for us but we have learned to be patient with her!
She too is now sleeping a lot in her chair and I think, since she is in excruciating pain from the arthritis and stenosis of the spine when she does move around, she would like to close her eyes and go to sleep.
Just wanted you to know that I understand what it is like……seems a lot of us are in this “together”! Thanks again for your timely “newsletter”.
Until Next Time
See you in late October; it could even be early November as Editor, Marcia Mee-Lee, will be arriving back from Australia later October.
David Mee-Lee, M.D.