Voices Across America

My Goal: a system founded on empathy, equality, and excellence

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Rachel

State: Michigan
Congressional District: MI08

Diseases

Gastrointestinal Disease, Genetic Disease, Heart Disease, Kidney Disease, Liver Disease, Lung Disease, Mental Health

Issues and Challenges

Rachel has encountered: Caregiving, Invisible Illness, Job Insecurity / Loss, Legal, Medical Discrimination, Nursing Home / Assisted Living, Premium Payments, Social Security Disability, Transparency in Health Care

My Story

June 13, 2023 my mother was admitted for abdominal pain and shortness of breath to Ascension St. Mary’s of Saginaw, In addition to 6/13, electrocardiogram was performed. On 6/14, an echo was performed and on 6/15 a nuclear stress test. Patient was cleared by cardiology on 6/15 where the determination was made that heart issues were not critical and she could follow up as out-patient therapy. Gallbladder surgery was performed on 6/17 and she was discharged on 6/18, with no recollection of how she got home. No immediate family member drove her home.

Note: it was noted that upon admission she was NSTEMI (non-ST-elevation myocardial infarction) upon arrival and electronic medical records stated this visit was Pneumonia related.

Upon reviewing her medical records, I discovered many discrepancies that have me feeling very uneasy and looking for answers. Let me start by saying that I was pleasantly surprised that upon her admission to Ascension on June 13th, the medical team performed the gallbladder surgery without addressing her pre-existing heart conditions, given upon her 6/13 admission she was NSTEMI, had high blood pressure, RVR, CAD, and was in heart failure.

On June 27, 2023, in an attempt to contact my mother, I was unsuccessful. To my distress, she had independently called 911 and was subsequently admitted to Ascension hospital’s Intensive Care Unit. It was disconcerting to learn that she was experiencing “respiratory failure” along with Pneumonia, and also according to Ascension was Septic. Given the discrepancies from her medical records, I am unable to tell exactly what happened or when she was dosed with what medications. One record notes when she was in “en route to the ED she was given haldol”, and in that same paragraph mentions “she was treated with rocephin and doxycycline”. Further down in the hospital notes it is noted that the initial reaction was thought to be due to azithromycin. What I find even a little more upsetting is that given her previous hospitalization and the condition of my mothers heart, not only should this have been taken into consideration but was it necessary? In addition, another hospital course noted: “I believe the patient may have pneumonia versus pulmonary embolism”, and further down in the notes goes on to explain that the patient was given haldol after evaluation in the ED”. It is not clear to me when or where the haldol was given.

Although Ascension would like to state that my mother was stabilized and chose to downgrade her to the “progressive” floor - her cognitive abilities continued to decline. The nursing staff and nursing-assistants were extremely rude. Upon arrival to visit my mother one evening, she wasn’t in her room. Since my mother was a fall risk patient, my first thought was to ask her nurse; after all she did have an alarm on her bed. I approached the nursing station to ask where she was, since I didn’t initially see her in her room, I was so “kindly” told that she escaped from her room and “shit in the shower”, which was located across the hall. Confused and trying to escape the situation, I went back to my mothers room and she had been in the bathroom. She took it upon herself to go to the bathroom, and quite honestly I never thought to check there, nor am I sure what happened to the alarm, why it didn’t go off or why the Asenscion staff would ever speak to a patient’s family in this manner. My mother was embarrassed that she had been having more than the “average” bowel movements, to be frank the staff wasn’t kind!

In fact, she had been sitting in her own mess at this point. I pushed the call light and monitored how long it took for the nurse to respond; 9 minutes and 57 seconds later! I requested to speak with the unit manager or house supervisor. I waited over 2 hours, and then requested that the manager call me. No one ever did call me nor did they address my concerns. This was discussed with staff clergy, when I requested a patient advocate, however, I never did receive follow up by the administration at Ascension. As the days progressed and cognition continued to worsen, I promptly and repeatedly insisted on an MRI, which was finally attempted on July 4th after her condition had worsened, and by this time, she was being transferred back into the ICU now requiring an NG tube for feeding. Due to the need for anesthesia, the MRI couldn’t be done until July 5, 2023, (holiday weekend). However, That stroke would have never been identified we hadn’t been adamant that something other than “just an allergic reaction” was wrong! This was simply “doctors not listening to what the family was observing”, and choosing to treat the respiratory issues.

The MRI results confirmed that she had suffered a stroke within 24 hours of the imaging procedure. Regrettably, I feel the ICU failed to do the proper checks which lead to many critical oversights! Following her stroke, she began to show slight signs of improvement and was eventually discharged from Ascension to Avista Rehab to begin rehabilitation on July 22nd. Upon discharge to Avista, there were major discrepancies between the medication discharge list sent by Ascension and what she should be taking at Avista, not to mention, discharge from the facility when she was sent home; she was sent home with a referral for In-home health care. Upon arrival home and getting her settled, I called the home health care nurses and the referral Avista sent did not take my mothers insurance. Additionally, Avista sent all the scripts unsigned, meaning they are not “formally” signed by a doctor. When I called there to check why they thought it was acceptable to do such a thing, I was directed to call my mothers primary care doctors after hours contact number. I kindly dis-agreed and told them I would drive back and get the medication they had left over for her. I am still concerned for our nursing facilities and why as a society, this type of behavior is acceptable?

Following my mom's recent hospitalizations, she had a follow up appointment with a neurologist. We were truly grateful for the immense support and concern shown during this time. However, the neurologist's evaluation of the stroke-related MRI images significantly differed from the initial hospital reading, causing considerable unease within our family. The discrepancy in results has raised profound concerns, yet unfortunately, a comprehensive explanation to address these concerns hasn't been provided, leaving us with lingering uncertainties. While we deeply appreciated the support, the recommendations for additional testing would take months, leaving us feeling both hopeful and defeated simultaneously.
Subsequently, my mother went back to Ascension ED on 9/7 and regrettably, she was allowed to ch
eck herself out AMA, despite her unstable mental status. It is deeply concerning that it took nearly 2.5 hours for Ascension to contact a family member. Additionally, they permitted her to discharge herself when she was clearly in need of medical attention and lacked the mental capacity to make such decisions, when found. Additionally, in our attempt to re-admit her back into the ER, she was inexplicably denied admission, therefore we took her to Covenant hospital. A formal complaint has been filed with the Center for Medicare/Medicaid and the State of Michigan.

Initially, her stay at Covenant started out very positive and we saw her health begin to trend upward. The cardiologist assured us that although she did have severe heart problems, we had time to get her well, and the surgery could be more towards the end of the year. The Psych team deemed her as incompetent to make decisions for herself and as a family we actually felt heard. That was until they realized that my Mother was not going to sign any advanced directive or power of attorney paperwork then things started to suddenly shift. On 9/16 we were told the scenario would be reevaluated on 9/18. On 9/18, Covenant re-evaluated and once again they deemed her competent to make her own decisions and discharged her from the hospital. I would like to make note that I explained over several different conversations what our experiences have been over the last several months, explaining to the case manager that my mother was not able to care for herself. She was not able to remember to take medications on time, she lived alone, and given her mental status it was not safe for her to live with me and my family as I have young children at home. My sister has health issues herself, she lives with a brain tumor and is severely ill with Crohn’s disease given I have young children. Additionally, my mothers BNP level was 4500 which is considered to be quite critical for a patient in Heart failure, so again as a family we are still not understanding the justification for the discharge. I specifically stated to the case manager that given prior history, this would happen again, and my Mom was back in the ER and on 9/27 my Mother was found face down on the floor semi responsive. It was determined she had flash pulmonary edema and she was then transferred to the ICU where she remained on a ventilator and in 4 point restraints. My mother was scheduled to have open heart surgery the morning of October 2nd, and due to her decline in health, the surgery was no longer an option at that time. We were told she had to be “fully optimized”.

At this time, she was in cardiac shock, contracted two different types of MRSA, and her organs were in extreme distress. She barely opened her eyes, couldn’t speak in full sentences, and lacked the ability to recognize her own siblings, daughters., or grandchildren. It was heartbreaking to watch her quality of life being slowly taken from her as her overall health continued to decline from a series of unfortunate events that could have been prevented.

What I find even more upsetting is that for 3 days in a row we asked the cardiologist and the neurologist to find a time to meet with us in person so that as a family we could better understand what we were facing. I never meet with them both in the same room. I understand doctor’s are busy but making rounds at 5:30-6 am and discussing a patient's health, when they are not functioning properly from a cognitive perspective is not something I will ever understand. We kept being told, “we need to take this day by day” which I not only found very disheartening and disturbing. I placed a call to the patient advocate during this time, in which the on-call administrator did return my call, however, I still never heard back from the patient advocate. My goal in obtaining an advocate was to ensure that no other family ever has to endure the heartache, pain, or complexities of this deeply fragmented health care system that is nearly impossible to navigate.

On October 5, 2023 after a three-day wait at Covenant ICU, seeking answers, Covenant admitted there was nothing more they could do to assist my mother, and transferred her to Henry Ford Medical Center (tertiary unit), known for its specialized and advanced care for those with complex heart conditions. During her stay at Henry Ford, she made a massive recovery and seemed to be doing very well. Henry Ford changed many medications and made adjustments as they saw fit. My mother gained a majority of her mental capacity back and she seemed to be doing well considering what she had gone through over the previous several months. The challenging part for me was knowing what home would bring. She always seemed to do very well in the hospital where all medications were given to her and her needs were fully met. However, she had a very hard time caring for herself in her home environment. I had many conversations with Henry Ford sharing my concerns. If the goal was to get my mother “optimized” for surgery, then sending her home was not the best suitable option for her.

On October 20 my mother was transferred from Henry Ford to Hoyt Nursing home. Upon discharge from Hoyt Nursing home on Friday October 27, 2023 - she left with no medication. After calling there several times, I was told the scripts were faxed to the Rite Aid Pharmacy however, the pharmacy said otherwise. To keep my mother’s medication regimen safe and healthy we paid out of pocket for 3 days worth of medication due to the weekend. The following week, Hoyt still did not have medications and the pharmacist stated they had already filled the scripts. In pure frustration, I called the insurance company that dialed in the Henry Ford pharmacy. The Henry Ford pharmacy insisted that my mother was discharged with the remaining 25 days worth of her medications and that Alex from Hoyt Nursing home signed the medication release. To this day, the medications have never been found or accounted for rather the insurance company filed a lost/stolen claim and the scripts were re-issued.

Upon arrival home, my mother seemed to do fairly well. She didn’t necessarily have the capacity to keep track of her medications, or clean her home etc? No, but cognitively she was the best she had ever been. We saw the cardiologist at Henry Ford on October 30, 2023 that requested my mother do have a TEE of the heart and a liver biopsy to confirm there was no cirrhosis, in which both procedures would require her to come off Warfarin. The liver biopsy was completed on 11/29 and confirmed on 12/12 there was no cirrhosis. What I can’t quite understand is noted in her chart at Covenant is that “patient's biopsy was confirmed 11/2023 and she is awaiting liver transplant”. This was most certainly never discussed or even on the table for my mothers case. Perhaps charted for the wrong patient.

On December 8, 2023 my mother had developed a lung clot and was admitted back to covenant hospital. She was doing fairly well, went home and went back to Covenant on December 14 because she wasn’t feeling well. I started to notice the delirium coming back when I visited with her on Friday, December 16. Covenant wanted to discharge her and send her home on December 17 but she said she wasn’t feeling well enough to go home. December 18 was her virtual follow up appointment with the Henry Ford Cardiologist. We learned virtually that she was not a candidate for surgery. Soon after her condition deteriorated and her shortness of breath became extreme. She was moved urgently to the ICU. Around noon on 12/18 I was asked to decide if my mother should be placed again on life support as she would require intubation, and now dialysis as well, since her kidneys were not properly filtering her blood (acute.) Due to my mothers wishes, we elected for comfort care and in house hospice. Our family surrounded her with love and empathy, until my mothers failing heart could no longer sustain life. She passed on the morning of 12/19.

Having witnessed my mother’s enduring suffering in the face of numerous hospital errors, I cannot help but reflect on the profound impact these experiences have had on our family. Throughout this challenging journey, it has become evident that the least doctors could offer is the courtesy of honest, open and compassionate communication with the family. The weight of seeing a loved one struggle through medical mishaps is compounded when there is a lack of transparent dialogue, and even more so when the loved one was a fully functioning human being prior to June 13th. In such trying times, the importance of clear empathetic conversations with medical professionals cannot be overstated, as it not only fosters trust but also provides a true solace to the families navigating the complexities of healthcare.

While it is crucial to prioritize patient satisfaction within our healthcare system, it is equally important to address misconceptions about hospital stays. While confusion alone shouldn’t be the sole reason for prolonged hospitalization, not assuming responsibility or rushing discharge solely to free up a bed is not prioritizing the patient’s overall well-being.

In our search for answers and solutions we want the medical community to see how their decisions affect families like ours in a big way. As we advocate for our mother and improvements in healthcare overall we hope that the lessons we learn from our experiences will help make the medical field where people are more responsible, have more understanding, and communicate in a proper manner.

Given the above detail, wouldn’t it be comforting to know patients and their loved ones could find comfort in knowing their voices are heard, their concerns are acknowledged and their suffering is met with unwavering support? Or, even better, as a culture, we demonstrated that our healthcare system prioritized patient satisfaction? Just then, maybe in that shared purpose, we could safeguard yet another life, preventing the loss of even just one more.

My Motivation and Inspiration

Losing my mother in the quiet confines of a hospital was a moment that changed me forever. The sterile scent lingered in the air as time slowed down, and I found myself standing at the intersection of profound loss and unyielding determination. Witnessing the complexities and shortcomings of the healthcare system during her battle stirred a fire within me—a relentless motivation to reform and enhance the way we care for our loved ones. Losing my mother was more than a personal loss; it became a catalyst for a generational shift. In honoring her legacy, I've chosen to be the trailblazer for future generations. My dedication to healthcare reform isn't just about the present; it's a legacy I'm determined to leave behind—a roadmap for those who come after me. I aspire to build a foundation where every generation inherits a healthcare system founded on empathy, equality, and excellence. This journey isn't just about my passion; it's about paving a smoother path for those who will walk it after me, ensuring a future where no one faces the same struggles my mother did.

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