Should New ICD-10 Code Reference Puerperal Psychosis?

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Doctors At The General AssemblyA recent blog post at Supercoder exclaims there will be a new code for Postpartum Depression in the ICD-10. What’s the ICD? The ICD ” is the standard diagnostic tool for epidemiology, health management and clinical purposes, according to WHO. This includes the analysis of the general health situation of population groups.” In simple terms, the ICD is where codes for diagnoses and treatment are found and then used by doctors for your charts and for insurance purposes. Of course, it is also used for research and tracking purposes as well (epidemiology).

One would think this is good news as it changes the convolutions from the ICD-9 and simplifies it into one code. But in my personal opinion, this is not a good step for anyone. Why not?

Because, according to the blog post at Supercoder, this new code will reflect a diagnosis of Postpartum Depression as Puerperal Psychosis. What’s the ONE thing we always, always, always cry from the rooftops?

Yup.

POSTPARTUM DEPRESSION IS NOT PSYCHOSIS.

And yet, in the new version of the diagnostic bible for medical professionals, postpartum depression will indeed, become psychosis.

Why the change?

According to Medicaid’s page regarding the switch from ICD-9 to ICD-10, “The ICD-10 code set is much better at describing the current practice of medicine, and has the flexibility to adapt as medicine changes.”

In my humble, non-professional, survivor opinion, this is not a move forward. Instead, this is a step back. We have fought so very hard to differentiate postpartum depression from psychosis. For women, it is an important distinction to make when seeking help. With media sensationalism, the cases the public hears about are rooted in psychosis but often referred to as postpartum depression. This is makes the need to differentiate between psychosis and depression urgent. Women and their loved ones need to be reassured that not all cases of Perinatal Mood Disorders are psychosis. In fact, Psychosis is extremely rare and doesn’t always end in death despite carrying the highest risk for both infanticide and suicide.

In reading the code information page at the ICD-10 website, postpartum depression is mentioned and explained in detail. It’s done quite well, actually. However, the fact remains that the leading words are “puerperal psychosis.”

According to Wikipedia, the definition of “Puerperal Psychosis” is “a term that covers a group of mental illnesses with the sudden onset of psychotic symptoms following childbirth. A typical example is for a woman to become irritable, have extreme mood swings and hallucinations, and possibly need psychiatric hospitalization.” While this does indeed describe Perinatal Mood & Anxiety Disorders, emphasis must be placed upon the fact that psychotic symptoms are not part of all of those diagnoses found under the Perinatal Mood & Anxiety Disorder umbrella. Only one – Psychosis, involves psychotic symptoms.

I did not struggle with Psychosis but rather with Obsessive Compulsive Disorder. I experienced a near-psychotic break as a result of a negative reaction to medication but it resolved once my medication changed. (This is why it is so important to communicate with your physician about any changes in behavior while on any psychiatric medicine).

While I appreciate the effort to simplify the coding for Perinatal Mood & Anxiety Disorders, the road this starts us down does not seem to clarify much of anything for women, for doctors, or for the media. The results of this change may prove to be a further hindrance to treatment and increase sensationalism with rare cases ending in infanticide and suicide. Imagine a young mother in a room with an untrained physician being informed that she’s just scored positive on the Edinburgh Postnatal Depression Scale and with this diagnosis of Puerperal Psychosis, she’ll need medication, etc. One would hope physicians would be better but there’s always the what if…the what if that I hear all too much from mothers who have experienced the untrained doctors. Perhaps this is what frightens me most.

I would love to hear the opinion of others regarding this change to the coding for Perinatal Mood & Anxiety Disorders. Do you think it’s a step in the right direction? Or do you see it as a hindrance to treatment and outreach? Codes are so rarely discussed publicly so perhaps it won’t matter in the grand scheme and I’m over-reacting. But in a world where labels matter (and they do, in the Perinatal Mood & Anxiety Disorder world), this, in my personal opinion, only ends in a huge leap backward.

Chime in below with thoughts and questions.

(photo credit: “Doctors At General Assembly”, Waldo Jaquith @flickr)

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Perinatal Mental Health Hero

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Perinatal Mental Health Hero

I recently was introduced to a Labor & Delivery nurse who is making a huge impact on the state of perinatal mental health care pathways. I could feel the passion come through in her voice as we spoke a few weeks ago on the phone for nearly two hours about what she was doing to raise awareness and increase access to quality care in our local area (Washington, DC metro area) for women who desperately need it.

I asked Kisha to share her story in a few paragraphs, and this is what she sent me to share with you:

“I grew up in the small southern town of Crowley, Louisiana. After graduating High School, I enlisted in the Coast Guard to see the world. I was stationed in Hawaii for 3 years at a small boat station, then became a USCG Dental Technician Petty Officer 3rd Class. My final duty station was at the Department of Transportation in Washington, DC. Prior to leaving the USCG, I became a Massage Therapist. It was during my 5 year stint as a Massage Therapist, that I rediscovered my heart for nursing. I graduated college, became a Registered Nurse, and a mom at 30 years old. After working as a Mother-Baby and Pediatric RN, I took a chance on Labor & Delivery and found my niche in nursing!  Eight years later, I am still working as a full-time night shift L&D RN.

Being a Labor & Delivery RN is one of the most exhilarating & frustrating experiences. Over the years, I have gained invaluable frontline skills, instincts, and knowledge about calming a woman’s fear in the throes of labor and empowering her to embrace motherhood. I am proud of these abilities and love sharing the birth experience with women and their families, but in all honesty the realization of perinatal mood and anxiety disorders (PMADs) prevalence among mothers and its detrimental impact on families has dramatically shifted my perception and purpose. My heart breaks knowing that over 8 years and countless births, 1 in 7 of those pregnant women and new mothers that I cared for inevitably went home suffering in silence from a PMAD. Maybe some of them already knew they were high risk and had support in place, but for many they went home with an infant and the expectation that their mental health was secondary in motherhood. As I continue to bear witness to the subtle shifts that seem ‘normal’ after childbirth (lack of sleep, lack of self-care, lack of support) that directly contributes to this needless suffering, I have found my life’s work is to destigmatize PMADs, while alleviating the unnecessary suffering of these women and their families.

As a frontline nurse, I believe that we as a profession are key to a long overdue paradigm shift in perinatal mental health. We are well-positioned and equipped to assess the mental health of pregnant women and mothers in the acute care setting, provide them with the first aid emotional support they need, and connect them to the appropriate perinatal mental healthcare providers and resources in their community.”Kisha Semenuk is a mama to two young boys. And as a night shift nurse who recently obtained her Masters of Science in Nursing, Kisha completed her Nursing Capstone Project on the knowledge gap she identified when researching perinatal mood and anxiety disorders and effective postpartum depression screening using the Edinburgh Postnatal Depression Scale (EPDS) among frontline perinatal care providers (OBs,Perinatal RNs, & Mother-Baby RNs).Through her deeper research, Kisha became acutely aware that as a frontline RN she was bearing witness to the silent suffering of so many women and families. Nothing was being done about it on the frontline and Kisha wanted to take action to make lifesaving changes.

She began actively networking with frontline OBs and built a team of fellow perinatal mental health champions who helped her to compile and organize an online resource which will allow women and their families to easily locate specialized, local professionals, support groups and treatment facilities. This resource will be kept at the fingertips of frontline nurses who are often the first healthcare professional to recognize the emergence of a perinatal mood disorder.Kisha’s mission with the DMV (DC-Maryland-VA) Perinatal Mental Health Resource Guide is to develop, disseminate, and maintain a comprehensive, up-to-date, regional directory of specialized mental health providers, support groups, advocacy organizations, and other relevant clinical resources pertaining to perinatal mental health. This directory will assist providers, patients, and their families with obtaining specialized mental health evaluation and treatment during pregnancy and postpartum.

How amazing would it be if we could create a guide like this for every city in our country? I am so energized and extremely appreciative of all the blood, sweat and tears she has poured into this project and I cannot wait to see it take off and bring help and relief to so many families who in the past did not know where to turn.

I applaud Kisha’s dedication and drive for instituting change in an area all of us here at Postpartum Progress care deeply about.

{The DC-MD-VA (DMV) Perinatal Mental Health (PMH) Resource Guide is launching online by November 1 and is a result of an ongoing collaboration between the DMV PMH Resource Guide Team and existing DMV-based PMH Professionals and Perinatal Mood and Anxiety Disorders (PMADs) survivor support network. Team members include: Kisha Semenuk, L&D RN and MSN; Aimee Danielson, Director of MedStar’s Georgetown University Hospital Women’s Mental Health Program; Lynne McIntyre, the Mid-Atlantic Postpartum Support International Coordinator/Mary’s Center Maternal Mental Health Program Coordinator; Helen Conway, Psychology Major (C’15) Summer Intern; and Dina Karellas, L&D RN and Nurse Informatics Graduate Student; in addition to Adrienne Griffen, Founder of Postpartum Support Virginia (PSVa), and Nadia Monroe, Founder of Postpartum Support Maryland (PSMd).}

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Warrior Moms Are Key to Fighting Stigma

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Susan and Tiny BeanI had the thrill and honor recently to attend the recent Special Legislative Commission on PPD meeting with Representative Ellen Story this month.  My new friend (and fierce advocate and mental health professional) Mara Acel-Green extended an invitation to the open meeting – and upon walking in, I was floored by the feeling that Postpartum Progress belonged in the room.

The Commission invited Deborah Wachenheim to speak about her sister Cindy, whose story was featured in The New York Times earlier this year. Listening to Deb speak about the events leading up to her sister’s postpartum psychosis and death, I was struck by the genuine interest and concern of the room.  This was a meeting full of top tier mental health and birth professionals, legislators, and non-profit leaders.  Their heartfelt appreciation for Deb’s willingness to share something so personal (and freshly raw) and thoughtful questions gave me hope that the meeting was not just government lip service.

As the meeting progressed, organizations checked in with progress reports, included MCPAP for Moms, the Department of Public Health and the Community Health Center pilot programs.  Throughout each of their discussions, time and time again, the question that kept resurfacing was “How do we make sure screened mothers are being supported after their diagnosis?”

What these doctors are really concerned about is How do we get moms to follow through with their diagnosis and treatment?  The Commission has been focused up until this point primarily on training primary care physicians, pediatricians, and birth care workers on screening for postpartum mood and anxiety disorders.  But as any survivor can tell you, screening and diagnosis (though absolutely essential) are only the first of many hurdles on the path to wellness.  As suggestions were shared, I noticed that their solutions all focused on actionable items for healthcare workers.  And it seemed to me they were missing a piece of the puzzle.

Postpartum Progress doesn’t just “drop kick despair.”  It kicks stigma in the teeth.

After my own diagnosis, 5 months postpartum, I continued to struggle for almost 6 months with treatment compliance.  It wasn’t that I refused treatment, but instead that I was still struggling with so much shame that I just couldn’t comply.  Depression and anxiety rob a person of their sense of truth and rationality.  Psychosis steals reality itself.  How anyone could expect me to take responsibility for my own mental health treatment in 2009 still leaves me in disbelief.

I attended therapy regularly but fought against taking medications.  And though I knew the right answers to my therapist’s questions and believed them on some level, deep down I still carried such stigma about mental illness that I couldn’t separate myself from my disorders.  Not until I found Postpartum Progress.

Reading stories of other mothers just like me, I found my own courage reflected back to me.  Here were women who had battled the same terrible thoughts, who had raged at their babies, and who had felt worthless in their roles as mothers – and I looked up to every. single. one.  Postpartum Progress doesn’t just “drop kick despair.”  It kicks stigma in the teeth.

This is why I credit Postpartum Progress and #PPDCHAT with saving my life.  Not because Katherine Stone or Lauren Hale treated my anxiety and depression, but because they showed me I was worth saving – that I could and would get better.

This is what legislators, healthcare professionals, and non-profit organizations need to know: the key to getting mothers to follow through with treatment?  Is to disintegrate the stigma.  No one does that better than the Warrior Moms.

I’ll be meeting with the Commission staff and other Massachusetts organizations in the coming months to make sure Postpartum Progress is a part of the important conversations they are having about treating and supporting mothers during and after pregnancy – because the patient community?  Is that final piece of the puzzle.

 

Author’s Note: Postpartum Progress recently collected survey data from its Warrior Mom community and FaceBook fan page.  75% of respondents indicated that Postpartum Progress increased their likelihood to seek professional help for their condition.  You can read the entire report HERE.

photo credit: Susan Petcher

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