WHY DIDN'T THEY TELL ME?

I received the letter below. It is relatively long but is so pertinent to our health care system today that I am making it part of this blog.

Dear Barbara, Just read your book, “How Do I Know You? Dementia at the End of Life”, and what a Godsend this was. My mother just passed away after a "long goodbye." Looking back we think she began to show signs of dementia as far back as 10 years ago. In 2017 she spent a few months in assisted living and couldn't manage that, then ended up in a nursing home facility until she was hospitalized the last of November 2019 and then died on December 7, 2019. She was 81.

My two siblings and I were highly involved in her care. My brother is a pharmacist and was on top of all her medications and treatment. I was her court appointed guardian and advocated for her in numerous ways from the lighting in her room to the bruises on her arms from toilet transfer. We hired a personal caretaker to be with her when we weren't there. Linda saw that she had good days...taking her outside to garden, going to singings, church services, bingo, etc. Linda also kept the CNAs to task by demanding good personal hygiene care. Of course there is much more to her overall care in the facility and I share all that to let you know that we were highly involved and everyone knew it.

Mom's decline: October: Her food intake decreased and she began sleeping more. November: We blamed a urinary tract infection for her increased sleep; one day she wouldn't wake up. She still had food in her mouth from when CNA fed her; she had no response when speech therapist tested her swallowing and tongue reflex.

Thinking she just wasn't getting better in the smaller hospital adjacent to her long term care facility, we had her transferred to a much larger hospital in a neighboring city where three doctors worked for two weeks to "help her get back to baseline." MRI's, CAT scans, EEG, temporary feeding tube, medicine to draw fluid off her body, nasal trumpet, catheter, rectal catheter, IV fluids, and more.

I believe all these doctors knew she was dying. Everyone knew but us, her family. We kept believing she would snap out of it, especially with the UTI involved, UNTIL, the doctor told us on December 6 that she had a less than a 5% chance to return to her baseline and palliative care was recommended. Then, we knew she was dying. Twenty three hours later, she was dead.  

Your book explained so much. Mom's dying was almost exactly like you explained in your book. In hindsight, I am unsure why we, her family, were not advised, taught, or even given a clue about what was inevitable. We truly kept on fighting and advocating for her to get what we thought to be the best medical care she could get all the while thinking it would make some kind of difference in this outcome. In the smaller hospital, her doctor wrote in her medical records that "family would not accept prognosis." The doctor didn't tell us a prognosis, EVER. Why?

I believe if we had known what was really going on it would have saved us much agonizing deliberations about the right care for her. We could have made better decisions. Mom's family loved her very much, but could have accepted this news. I feel a bit cheated in that we were not informed when we tried so hard all along to be informed and be on top of things....and all her health care professionals knew it.

My question is: In your opinion, why wouldn't any of the multiple health care professionals (many of them doctors and nurses) assigned to Mom's case in the last 2 months of her life let us know that she was dying? They had to know.

I am so sorry to hear of your experience with your mom's dementia, care, and her eventual death. What makes your experience even sadder is you are not alone in how you were guided (or should I say not guided) by medical professionals. Your experience is occurring throughout this country.

The medical model in this country is about fixing people. Actually, it is about addressing the illness and diseases that people have. In a better world it would be about people who happen to have diseases.

We are born, we experience, and then we die. Our medical establishment does not seem to recognize that the body was created to die.

I believe we in the medical community should try to fix people when they are fixable. I also believe we need to recognize when a body is not fixable (an 81 year old with advanced dementia to the point of not swallowing is not fixable). We need to give the family direction in how to make their limited time special. We can give families the gift of time to say goodbye.