Dear Dr. K,
Please take the time to read this. You owe my family this simple gesture, a token of your time. I know you are busy. Do it anyway.
My name is Lora and I am the daughter of the late Harrison Steves who passed away at home on February 10, 2020 after spending the day under your care. My father apparently died of a heart attack at home the night he was discharged. This was despite being in your ER for nine hours and, according to the insurance statement HE already received, having undergone heart function testing that night: troponin, d-dimer, etc.
I feel very strongly that you need to hear my story and I want to hear your side as well. Please know that I write this out of the depths of my grief and the pain of the residual effects of dad’s death. I flew back to the Midwest as soon as I got the call that my father died. I was fortunate to get a flight out within 30 minutes. Despite a very conflicted relationship with my mother (a terribly dysfunctional family…thus the social work master’s degree), I knew I was needed to comfort her, as I am her only natural born child.
In the days that ensued, it became apparent that my mother was coping with far more than just grief. After taking her to her primary care physician and restarting her on all of her medications, none of which she had been taking for at least five months, I noticed she had significant behavioral and memory changes from the last time I saw her. A stat referral to neurologist was made and I sat with her during that life-altering appointment. She underwent a MoCA revealing a score of 11. My mother has dementia. She continued to decompensate, and on March 7 when she expressed suicidal ideation with plan, means, and questionable, but concerning,intent, I knew intuitively what to do: I put her in the car and drove her not to City Hospital, but to Hope Hospital. In their ER she was evaluated thoroughly as I completed not less than a three-page affidavit for psychiatric commitment into their geripsychiatric unit. She was admitted based on her current suicidality and lack of self-care. My mother who had suffered for years with depression and/or bipolar disorder as well as a personality disorder, was finally going to receive treatment and help. I have not spoken nor visited her since her admission; she rages for me on the unit, leaves confused and hostile messages on the home phone, remains disoriented and is prone to significant mood lability. I can no longer bring her comfort. It is unlikely I ever will. Since she was hospitalized, my petition for guardianship has been moved to expedited. I await trial here in the Midwest, away from my husband and two children. It will be six weeks this Tuesday that I arrived. My husband has advised me that I should not travel due to COVID-19 and I remain here, in my mother and late father’s home. I spend my days cleaning, writing, connecting with others via social media, and as of 2:00pm yesterday, caring for a sick relative. To say that I have my “hands full,” am “going through a lot,” or I that have “enough on my plate” wouldn’t even touch the depth and breadth of the pain my family and me are undergoing.
Please hear me out. I have hired an attorney to obtain the medical records, as our attempts to obtain them without a death certificate are futile. There are rules and HIPPA, I understand that very well. My aunt was denied said records – must have a death certificate. So we waited. For six weeks. The death certificatecame on Friday, having finally been signed by the medical examiner on March 19.
Are you aware of the process that happens when a person dies at home? In this case, my mother in her demented state did not understand why my father was screaming, groaning, and reportedly growling on the evening of February 10. She told him to “stop it.” She was scared and hid in the master bathroom as he continued to cry out in pain. Alone. She didn’t understand. I am working on forgiveness and trying to connect with the sheer terror that poor sick woman must have gone through that night. I know in my heart I will find healing and peace but please know it will not occur without significant pain, a journey I will take under the guidance of an expertly trained psychologist with very specific skill set. I am in good hands. My mother was not even aware that he had been away for 9 hours, of how he even got to City Hospital emergency room. We assume it was by ambulance because he did not drive himself. We are seeking those records as well.
I am curious at this point what is the protocol for releasing an 82 year-old man who has recently gone thorough chemotherapy and who presents to City Hospital ER via ambulance? What provisions are in place for this scenario? May I suggest that going forward, the hospital employ a social worker to screen all patients over the age of 80 – the frail elderly, perhaps you are familiar with the term – especially those who come by ambulance, those who are experiencing chest pain and shortness of breath. Those for whom the only other person in the home is in significantcognitive decline, the woman he loved and was committed to for almost 50 years, the woman he tried to manage at home in what must have been a horrible and traumatic existence. No one asked about who could help him at home, if he had adequate supports. No one inquired if the phones were working. Tragically, my parents had cordless phones, a set of four. None of them were charged and no one could call out. All the phones were dead. I will never know if my mother thought of calling 911 or if she tried and the phone didn’t work, like so many other devices which I am learning “didn’t work.” Her personality and her dementia sealed her into a prison where she carried out her way of viewing the world: the problem is not me, it is something outside of me. Several new laptops, sewing machines, tablets, coffee makers “didn’t work.” The truth is that Loretta’s poor sick brain “didn’t work.” She did have the ability to leave the bathroom when she heard the screaming stop and having heard a thump, she attempted to rouse Harrison. He was nonresponsive. She left the house somewhere near 11:00pm (I am still seeking records from the police and EMT) and went in the cold and dark night to the street and yelled for help. She yelled loud enough for someone to call the police and they came and she told him her husband wouldn’t wake up. She was placed in a cold and locked police car where she waited frightened and confused. Imagine what that must have been like. I did. And you should too. The police must have entered the house and found Harrison down and called EMS. I know they worked on him. He must have had a pulse? I know they tried at least, as I was the one who cleaned up the room, picked up the round electromagnet defibrillator pads that littered the bedroom floor, and picked up his dentures. You see, I had to ready that room for my mother to sleep in again as it is the only bed on the main floor and it was not safe for her to ambulate up stairs. Cleaning that room was the focus of my attention on February 12. Sit with that experience for a moment.
I am curious why City Hospital did not admit him. I want to hear your side of the story desperately. My husband is a physician too. I know there are two sides to every story and I promise you I will listen to your side without attacking you. Changes must be made, however. This cannot happen again. Please know that I will not hesitate to go public with my concerns, especially if they are not addressed in a timely manner.
Since this was a home death with no signs of foul play, the medical examiner was called and waived jurisdiction over an autopsy. My father’s primary care physician was asked to sign the death certificate, as is protocol with a death at home of natural causes. He declined. Please know that I hold harmless his doctor; I respect and clearly understand why he was unwilling to sign the death certificate. As I understand, he reviewed the ER note and learned that Harrison presented to City Hospital ER with shortness of breath, and I understand that he said “people do not die from shortness of breath.”
Together with my family, we discussed at length having a private autopsy. Ultimately, I made the very difficult decision not to seek the autopsy and as per dad’s wishes, he was cremated (as a young man, my father served as a fireman). If you feel relief at reading that he was cremated and we chose not to pursue a private autopsy, please don’t. This is not over and I will not rest until I am assured that changes will be made at City Hospital. He likely died a painful and terrifying death –let that sit with you for moment. Read the line again. He likely died a painful and terrifying death and he was not ready to die. Do what you need to do to get through this, go to church, call a mentor, meditate, seek spiritual counsel, obtain executive coaching…but DO SOMETHING. I am assuming you are a caring person; you went into medicine to help people, some form of making the world a better place. I don’t know you, but I am married to a physician and I hope you are half the man he is. My father had no one to take care of Lois and he would have never left her like this. He always provided for her. My suggestions and requests are below as a plan of action, Dr. K:
1. Meet with me face to face, along with the president of the hospital, my aunt, and my attorney. The other family members live out of state or are undergoing medical issues.
2. In this meeting I want the following to occur: Go over the medical records with us and explain to us what happened to Harrison at City Hospital ER. Talk to the nurses that were on that night. Walk me through his nine-hour ordeal. Let me heal from this. Explain to me why he was discharged, how this could ever be considered safe. Help us understand.
3. Employ an ER social worker dedicated to the care and welfare of the frail elderly in your community who present to the ER. Mandate screenings of all patients over the age of 80 who have red flags: come by ambulance, seem confused, have chest pain. Social workers can sometimes get a lot of information out of someone, a skill for which they are well trained.
4. Dedicate something in that hospital ER in my father’s great name. Let him not be forgotten or how City Hospital treated him be forgotten. Let it be a reminder.
5. Clean up the paper trail that occurs when a patient dies. It is VERY painful and disrespectful for a grieving family to receive insurance statements addressed to the deceased. We can receivethese, but not medical records? Distasteful.
6. Have my father’s chart peer reviewed. Allow me to attend this meeting as a silent witness. I will listen and respect the process.
7. Please know that I have additional requests that I will discuss with my attorney and will be reaching out by the end of the week (March 29) to follow up.
Thank you for taking the time to read my letter. I look forward to everyone’s prompt reply, especially you, Dr K.