They were killing her mother with negligence, Melissa Mullamphy recalls. And eight months later, Mullamphy’s mother succumbed following a cancer battle fraught with frustration, medical missteps and the endless bureaucracy that goes hand in hand with navigating our complex healthcare system. Not in Vain, A Promise Kept is Mullamphy’s candid account of her mother’s journey and the family’s roller coaster of emotions. Readers will witness the mistakes that compounded their pain, the small victories that gave them hope, and above all, the love that kept them going during an indescribably difficult time.
Mullamphy shares shocking lapses in her mother’s care, including blood clots the doctor fails to notice, the confusion surrounding her mother’s DNR order, the time she found her mother wearing another patient’s bracelet and the unspeakable heartbreak of learning that all along, the hospital had used the wrong type of chemotherapy drug for her mother’s specific cancer. Not In Vain, A Promise Kept is not without moments of hope, such as when the family is told the tumor has shrunk and when her mother’s last-ditch surgery to remove the tumor is declared “wildly successful.”
I had a chance to do an interview to learn more, in which she said:
I wrote this book for many reasons. First, it was a way of grieving. While it sounds like torture, and at times it was, going through the motions helped me heal my heart. I have had five different versions over the past ten years, and they vary based on where was in the process. The early versions are hard to read because I was so filled with anger. I still have a lot of it, but I can manage it. Another reason is my Mom was from a generation called "The Silent Generation." According to the internet, they are defined as: The "silent generation" are those born from 1925 to 1945 – so-called because they were raised during a period of war and economic depression. ... The label reflected the counterculture of a rebellious generation, distrustful of the establishment and keen to find their own voice. I can see where my Mom was distrustful of doctors. As a child, she was sick, and for reasons that I don't know, she failed to be proactive in her own self-care. That unfortunately led to a 23 cm mass found in her abdomen and severe and deadly ovarian cancer. The only reason we convinced her to go to the emergency room was because she was so distended that she could not hide it anymore, and it was causing discomfort. After a long and heartbreaking diagnosis, she fought eight long months to try and beat it and lost. During those months, there were many medical mistakes. Big mistakes. Mistakes that made a sick and suffering lady suffer more and mistakes that took time away from her life and us.
I also shared my grief and how I handled it. As someone with a master's in counseling psychology, worked in psychiatric emergency rooms, ran group therapy, and worked in step-down houses, I failed miserably. I was also "too smart" to get the proper help, and I was textbook depression, anxiety, grief, and PTSD. I was wearing size 0 junior clothes to work and was mad at the world. I self-sabotaged my health both physically and mentally. I want the reader to understand that while we are taught there are stages of grief; it doesn't fit nicely into a box.
Every chapter from day one has some kind of medical mistake or learning. Each chapter represents the month in time and is ended with "what we learned and what I might do differently. Patient advocacy is critical to patient care. If your loved one is critically ill and/or hospitalized for a long time, they need you. Even though you might not be on the hospital payroll, you are very much a member of the patient team. Your role is so important.
In contrast, something that might sound irrelevant could be crucial to the patient's care. For example, if I was there for the day, and my Mom was in bed most of the day, I know if she ate her meals, if she had breakthrough nausea, breakthrough pain, if she had difficulty ambulating to the bathroom, etc. If you are a cancer patient, calorie intake is critical. Meal services do not mark your chart indicating what you ate and did not eat. It is not their fault; it is just not their job, BUT, with cancer comes wasting disease where cancer eats healthy cells and calories, so it is common to lose weight and become malnourished. I know if she drank half of a boost for an entire day and would share that information with her care team. Also, people from my Mom's generation do not want to be a "burden," so they generally do not use the nurse call bell. I saw this behavior repeatedly with my Mom, so I would ask for help, or if help did not come, I would walk to the front desk. Another example of many that I remember is she was getting a Zofran drip for nausea, and it was not turned on. The valve wasn't turned on, so she wasn't getting the medicine. This was purely human error (it happens), but she was nauseous all day. I include a lot of suggestions too. For example, befriend the nurses. They are, in my opinion, the most important person on the patient care team. They can make or break the process. Find out the organizational chart, charge nurse, and facility patient advocate. While this is important, you have to remember they all work for the same employer so while they are critical, always remember who pays them.
Other tips can be never get discharged without a hard copy script in hand. Do not assume because they said that they called it in that the pharmacy has it. I can't tell you how many times Mom was discharged, and we showed up at the pharmacy, and there was no script, especially if it is narcotics. Once you leave the hospital, getting a hold of the discharging doctor will be close to impossible and take time.
Keep a journal and attend appointments. When someone is given a grim prognosis like cancer, they do not have the cognitive ability to take everything in. You will need to take notes and help them follow up and keep a calendar. It is overwhelming. Write down what medication is prescribed and what it is for, and the prescribing doctor. Keep track of your loved one's weight, labs, and essential phone numbers. I could go on forever. I'd love to hear your thoughts on the book.
To summarize, I had a medical malpractice suit. My Dad and sister did not want to litigate. I did, not for the money but for revenge, but it would not bring her back, and it would put my family through it for years in court. Instead, I wrote the CEO of the hospital and told him the top 10 mistakes of 25 plus under his leadership and asked him to zero balance my Dad's net balance. Two weeks later, he did. CEOs do not do this. It implies liability. My goal is to share my Mom's story so others can find their voice and not go through what we went through. It is a memoir/self-help. Thank you very much for your interest.
Author Melissa Mullamphy has a master’s degree in clinical psychology and has worked in psychiatric emergency rooms and step-down houses. Forever a student of mental health, she has also worked with many nonprofits, including those benefiting military veterans. For almost 20 years, she worked as a domestic operations manager for a major corporation. Following her experience with her mother’s cancer diagnosis and treatment, she began blogging about current events as they relate to healthcare.
For more information, visit http://www.melissamullamphy.com, or follow the author on Instagram at https://www.instagram.com/melissamullamphy/.
Available from Amazon.com, BN.com, http://www.melissamullamphy.com and many other online outlets
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