HOW THE "TAKE CARE OF MAYA" CASE IS A WAKE UP CALL FOR INDEPENDENT PATIENT ADVOCACY
Maya Kowalski is a complex medical case. She is one of millions of patients who suffer from a chronic, complex health condition. You may already be familiar with Maya’s case though the Netflix documentary: “Take Care of Maya.”
Maya’s case has made national headlines. Her family has filed a $220 million dollar lawsuit against John Hopkins All Children’s Hospital. The Kowalski family is suing the hospital, claiming the actions of the hospital and the Department of Children and Families caused Beata Kowalski to take her own life after she was kept away from her daughter for 87 days after a judge ordered Maya to be sheltered at the hospital while child abuse allegations were being investigated.
The case is being live streamed daily on YouTube via Fox 13 Tampa Bay and is expected to last several weeks.
Maya’s case is unique because she suffers from a rare condition called Complex Regional Pain Syndrome (CRPS) and her real life story was featured in a documentary on Netflix called “Take Care of Maya.”Maya’s quality of life was extremely poor at age 10 due to extreme pain. If a person touched her, it felt like her skin was on fire.
A local anesthesiologist named Anthony Kirkpatrick, who runs a center focusing on CRPS, diagnosed Maya and suggested ketamine infusion treatment. Maya’s mother Beata was a registered nurse and like most mothers, she fought as Maya’s advocate to research and identify a qualified medical doctor/specialist who could provide a correct diagnosis and effective treatment to alleviate Maya’s excruciating pain and improve her quality of life.
At one stage, Beata Kowalski pursued treatment for Maya in Mexico, which consisted of high dose ketamine. High dose ketamine has not been approved for legal use in the United States.
Maya’s case is unique because she suffers from a rare condition called Complex Regional Pain Syndrome (CRPS) and her real life story was featured in a documentary on Netflix called “Take Care of Maya.” Maya’s quality of life was extremely poor at age 10 due to extreme pain. If a person touched her, it felt like her skin was on fire.
Many Americans travel to integrative clinics in Mexico on an annual basis for cancer treatment. I have a friend who is a six year cancer survivor in part, because she had cancer surgery at an integrative medical clinic in Mexico. She went on a “Go Fund Me” after her previous doctors in Georgia had advised her there was nothing more they could do for her. The high dose ketamine infusion treatment administered in Mexico was effective for Maya and substantially reduced her pain.
In 2016, Maya’s parents (Jack and Beata Kowalski) took her to the emergency room and she was admitted with severe stomach pain at John Hopkins All Children's Hospital in Saint Petersburg, Florida. Maya saw at least three independent physicians in the Tampa Bay area prior to the hospitalization. Independent meaning they are not employed by a hospital or hospital healthcare system.
One was a highly respected physician specialist (Dr. Pradeep Chopra) who is double board certified in pain management and anesthesiology. Dr. Chopra has treated approximately 125,000 patients with Complex Regional Pain Syndrome (CRPS). Dr. Chopra took the stand last week as an expert witness on behalf of Maya and the Kowalski family. His testimony may potentially be the smoking gun for Maya and her family. When being deposed, Dr. Chopra stressed a few critical points that he lives by with regards to assessing and treating a patient with CRPS. He never wants to form a biased opinion of a new patient. He never looks at any medical records sent to him before he meets with the new patient. He sees the patient first, carefully listens, asks questions and gets to know the patient and family. He conducts a full physical examination of the patient. He sits down with the patient and family to come up with real expectations and a plan to help them. This allows Dr. Chopra to form his own opinion of the patient. Folks, this award winning physician is a hero!
Dr. Chopra is a leading expert in his specialty area but also a true leader. His high level of listening, empathy and emotional intelligence skills make him a role model for all physicians, clinicians and hospital leadership. Put yourself in the shoes of a mother (Beata Kowalski) who was a registered nurse and determined to get her child the care needed to alleviate her extreme pain.
My mother was a nurse (BSN) and I can’t even imagine the level of desperation and anxiety she would have if I were in a similar situation. This is the most horrific type of emotional abuse to subject a loving, caring mother and father.
A major problem with Maya’s case, as with millions of complex cases, is our fragmented healthcare system!
CARE COORDINATION IS SEVERELY LACKING
As I watched the expert testimony by two independent physicians of Maya’s, there is no doubt there was NO COMMUNICATION or coordination with her medical records, diagnosis and treatment opinions, between John Hopkins All Children's Hospital and Maya’s very well qualified, independent doctor’s.
Sadly, this severe lack of communication among practitioners is happening daily. I saw it occur in my own complex, long term case years ago in Tampa Bay and have seen it in clients who come to me for help. Hospital healthcare system practitioners are overworked and being forced to see an unrealistic number of patients on a daily basis. The average doctor’s office appointment is less than ten minutes.
When you are a complex case and seeing several doctors and/or specialists, the majority of your doctors are not communicating with each other as far as your diagnosis, treatment, medications, lab testing, etc. If you are alone or don’t feel well, don’t know what to ask, feel intimidated or uncomfortable with your practitioner, this is what could happen.
-Potential misdiagnosis
-Drug interactions leading to other medications being prescribed unnecessarily. You may not even know why you are taking multiple medications.
-Falls, memory issues, and hospitalization from medication interactions that are severely impacting your quality of life.
-Complications from hospitalization leading to infections and/or death
-Inability to work when you are unable to obtain a correct diagnosis and treatment plan
-Disability and potentially death from not receiving quality care
-Loss of income and potential medical bankruptcy by spending years trying to figure out everything on your own.
WHAT IF?
If hospital and the Department of Children and Family Services had first communicated with Maya’s Harvard educated and Harvard trained CRPS pain management specialist (Dr. Chopra), Maya and her brother might still have their mother. Maya might not have faced hospital confinement. This legal case may have never existed.
HOW COULD MAYA'S FAMILY CRISIS HAVE BEEN PREVENTED?
This is how the case might have unfolded if a Professional Health Advocate had been retained in advance (PROACTIVE vs. REACTIVE EMERGENCY)
All of Maya's medical records would have been collected in advance and reviewed. This would have enabled the advocate to create a detailed timeline of Maya's events including her diagnosis and treatment protocols prescribed by her independent expert physicians.
Maya and her mother would have been respected and her case would have been taken seriously because a professional patient advocate prepares, negotiates and collaborates at the doctor's office appointment(s).
Dr. Chopra (independent expert on CRPS) would have been called in for a meeting with the hospital leadership. Beata’s integrity/character would have been reinforced by Dr. Chopra’s positive testimony of her.
The Department of Family and Children’s Services would have been dismissed after Dr. Chopra’s meeting revealed the true story/facts of Maya’s condition and treatment… If DFACS had to complete an investigation, the deadline should have been enforced to complete it quickly.
This is how I help my complex patients before it becomes an emergency:
— Conduct a thorough needs assessment and a patient/client history
— Request and review all patient medical records needed.
— Develop a plan of action based on the client’s assessment outcome, wants and wishes of the patient and patient’s family.
— Execute the patient’s Plan of Action.
— Prepare for and attend physician and specialist appointments (physicians, therapists, etc).
— Research for qualified, specialized physicians and doctors who are highly qualified in their respected field of medicine.
— Discuss treatment options with the patient and patient’s chosen physician(s)
— Ensure the patient and family are treated with dignity and respect
— Assist the patient and family with pursuing second and third medical opinions
— Collaborate with the physician(s) and practitioner(s) team.
— Prepare detailed summary notes from each appointment and ensure all physicians on the team (all specialists) receive copies of the office visit notes
YOU HAVE OPTIONS: This is the very reason I started my practice because I knew I was extremely ill and no one took the quality time to determine the root cause of my symptoms.
I was ill for years and desperate for a correct diagnosis and treatment plan.
I CANNOT STRESS THIS ENOUGH
Waiting until a situation becomes an emergency IS NOT the avenue you want to take!
When you are PROACTIVE by retaining a Professional Health Advocate, everything is planned according to your wants, needs and wishes. Your advocate will empower you with valuable information and choices, which in turn, will allow you to be in the driver's seat when making your personal health related decisions.
You also reduce the likelihood of being “profiled” as Beata Kowalski was. By working proactively with a knowledgeable independent Patient Advocate, you also reduce the chances of slipping through the cracks and unnecessary hospitalization. Remember a professional Health Advocate works DIRECTLY FOR YOU and has your best interests at heart.
In conclusion, the following is my opinion and should not be construed as medical or legal advice.
No patient should be treated as if they are making up their symptoms or condition. No patient (child or adult) should be medically gaslighted. No child should be imprisoned in a hospital or institution when there is no clear evidence that a parent or legal guardian has done harm to the child. No parent or legal guardian should be accused of Munchausen by Proxy where there is no clear evidence of harm or an actual diagnosis of MBP by a qualified practitioner. No state agency such as the Department of Family and Children's Services or hospital system should “drag their feet” for months on a case, causing undue emotional suffering to the extremely ill patient and family.
Sadly, there are many other Maya’s and families being subjected to unnecessary emotional suffering. The difference is that these families don’t have the knowledge, money or resources to fight our broken healthcare system.
I pray that Maya’s case will hopefully set a precedent that will send a clear message to the leadership of all hospital systems. I pray for God to provide the family with the strength to endure this trial, bring comfort, peace, wisdom and reveal the truth during this stressful storm.
No child, adult or family should ever have to endure what this family has gone through. Do you know anyone running from doctor to doctor and/or questioning their diagnosis? Are you tired of not being heard or taken seriously? Do you live alone or have a senior parent who you are concerned about? I help my clients and their families proactively navigate our complex healthcare system, obtain the quality care they need and help improve their quality of life. Contact me today to schedule an initial phone consultation.
Remember: This is YOUR life! Your health is your wealth!
Blessings,
Sylvia Reisman
Founder & Chief Patient Advocate, Purity Patient Advocates LLC