OK TO DIE PRESENTATION AT PULLEN 9-14 Disclaimer: We are not claiming to be experts in this field. We have no special training. We’re just people who had some experiences and done some research prompted by those experiences. MY MOM’S STORY When my mom, Nadine Kuper, died in June at age 92 ½, she’d been living at Independence Village for 10 years, a retirement apartment complex. It’s not an assisted living facility but several home health agencies are available to provide a variety of home health services for residents. In spite of a fall in 2009 that led to a traumatic brain injury and complete loss of speech, writing and comprehension of speech, after 6 weeks of rehab she bounced back mostly, returned to her apartment and continued to be active – going to exercise classes, running a little store at IV 3 days a week, playing cards, and being part of family celebrations at our home or my daughters’ homes. Slowly she had less energy, wanted to go out less, had several falls in which she thankfully broke no bones. Her short term memory also got worse and worse over time. All of this seemed to her family like a to be expected slow decline given her age. She also had a long history of TIA’s (small strokes) but to our knowledge they had been controlled with medication for some time.
Then on March 28 she had a TIA that sent her to Rex Hospital where she remained for 12 days as a cascade of other health problems emerged, including (1) an ileus in her bowel that required her stomach to be pumped out, (2) atrial fibrillation of her heart with pauses (her heart beating too fast and then stopping completely for short periods) and (3) a stricture in her esophagus that caused her to aspirate food into her lungs, creating a constant danger of pneumonia. Before she entered the hospital in March, no one in the family knew she had these conditions. We were suddenly seeing a cascade of health problems one on top of another within a short period of time. Once the cardiologist got the afib heart problem supposedly under control, she was released to Rex Rehab and stayed there for three weeks before returning to her apartment in late April. Throughout this time, my Mom made it clear that she wanted to go back to her apartment for whatever time she had left, not to an assisted living facility or nursing home and that she did not want any extraordinary measures taken to keep her alive. I set out on a journey to make that possible for her. As the oldest of her 4 children, I had been designated as Mom’s medical power of attorney s ince 1999 after the death of my stepfather. In the fall of 2014, a friend of ours stayed with us while attending a conference of end-of-life issues held right across the street from Pullen and she gave us a book by one of the conference speakers, “It’s Ok To Die”. Because I had read this book, and given the state of her health at that point, I knew what I needed to do once Mom was transferred to the rehab center – get a MOST form completed for her.
MOST stands for “Medical Orders Scope of Treatment” whic h I learned about from this book. Tom will talk more about it later. Basically it is a document completed by a patient and signed by a doctor. It belongs to and is to stay with the patient at all times, whether at home, traveling or in a health care facility. I was out of town the day Mom was admitted to the rehab center and when I got there the next day, learned the she was incorrectly admitted as “Full Code”, meaning that if she stopped breathing or her heart failed, the rehab staff and EMT’s would use all means possible to get her heart or breathing started again. I knew that was not what my mother wanted. I told a nurse that mom should not be designated as Full Code and that I wanted to complete a MOST form for her. We did this in Mom’s room with h er responding to the questions and the nurse filling out the form. Mom indicated that she wanted to be coded DNR (do not resusitate) and DNI (do not intubate) and did not want antibiotics if she got pneumonia or a feeding tube if she could not eat. When mom indicated “No” to a feeding tube, the nurse intervened with “But Mrs. Kuper, wouldn’t you want a feeding tube if it was only going to be temporary?” That nurse’s question was a turning point in what came to seem a battle to advocate for my mom and have her wishes respected in her dying process! I challenged the nurse that there was no way she or anyone could guarantee that the feeding tube would be “temporary” and she reluctantly agreed that was the case.
A few days later, when Mom was being transported to Rex Outpatient for a procedure to fix the stricture in her esophagus, I checked to make sure that her MOST form was with the papers the rehab center was sending to the hospital as it was supposed to be. The MOST form was not in the package and the rehab center couldn’t find it. I said that even if we missed her surgery appointment, we were not leaving for the hospital until the rehab staff found and gave me her MOST form which finally they did. At the hospital, I kept showing the MOST form to every medical person we encountered and emphasizing that it needed to stay with her every step of the way. No one seemed to know what the MOST form was. Finally a nurse in the pre-op area said that the MOST form was not recognized during surgery. I couldn’t believe my ears. When I protested, she said that I should talk with the anesthesiologist. He was a young doctor with a pleasant manner who explained that most family’s “waive” the MOST form during a surgical procedure because if anything happened to my mom while on the operating table, the doctor could intervene immediately to take care of the situation. I then asked him what guarantee he could give me that if Mom’s heart stopped beating or she stopped breathing on his table, she would be brought back by the surgical team with no brain damage.
Of course, he could give me no such guarantee, even though he said it would be highly unlikely for this to occur. At this point feeling shaken and vulnerable, I told this young doctor that as her medical power of attorney, I was not going to waive her MOST form. I wondered if I was being judged by the medical staff as an uncaring daughter. Before they took Mom to the operating room, I quickly called my three siblings to tell them what had happened and got their unwavering affirmation that I had made the right decision. On Mom’s release from rehab back to her apartment, the rehab center would not, on my request, give me her MOST form to take home as they should have as it is a portable document that belonged to her. Four nurses insisted that the MOST form was “facility specific” and had to stay with them in case she was admitted again. This is absolutely not true. I had to take mom back to her apartment, knowing that until I could get the rehab center to release her MOST form, if EMT’s were called to deal with a medical emergency she experienced, they would begin their protocol of aggressive treatments that she did not want, and if she were taken to the hospital, a cascade of treatments would begin that would be very hard if not impossible to stop. I called her primary physician and explained to his nurse my dilemma. She suggested I go to the NC Medical Society website to download a document that fully explains the MOST form, including that it is a portable document owned by the patient that goes with the patient wherever she goes.
I found the document on the Medical Society website but could not print it out because I’m not a member of the Medical Society. I called the nurse back and she downloaded the document, sent it to me which I took to the rehab center the next morning and got them to release Mom’s MOST form. It stayed posted in a prominent place in her apartment until she died. Mom lived at her apartment for just over 7 weeks after returning from rehab. My sister and I had to keep increasing the level of home health services to enable her to stay there until on a Friday we though for sure we’d have to have her transferred to a nursing home the following week. My Mom was tired and ready to die. She told us repeatedly, “I am ready to go”. She died early on Sunday morning in her apartment as she had wished.
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