I am a 65-year old Physical Therapist Assistant. I am retired now but have worked in multiple settings, including nursing homes, outpatient clinics, hospitals and home care as well, so I have a wide knowledge of end of life issues both professionally and personally.
Mom, prior to the illness, was the glue that held our family together. She was the fun one! I still remember her belly laugh. She also was very well liked and admired by co-workers. She sold World Book Encyclopedia. She was a District Manager and did quite well at it, she had personality plus. And she was the youngest of 9 children and was well liked by her entire family. She was the second one of the 8 children to die (one died at 2 from pneumonia). I was 21 when Mom was diagnosed with stage 4 metastatic breast cancer and I hadn’t even been to college yet. She was 53 and it was really the first time I remember my Mom ever being sick. She had been to her OBGYN regularly but he was not concerned about the lump in her breast. She took a friend’s advice and got a second opinion but it was way too late. She went through chemo, radiation, acquaintances went to Mexico for Laetrile, multiple surgeries, first to remove one breast and lymph nodes, later to fix broken bones from the cancer. The list is endless. I do believe she thought she would be cured. I do not believe any of these doctors gave her the truth about the devastating effects of treating stage 4 cancer and the extreme loss of her quality of life, not to mention the severe pain she had from the cancer in her bones. She was completely bedridden in a fairly short amount of time. At initial diagnosis she was given 6 months to live; she “survived” 2 1/2 excruciating years. She died at 56 years old, but what they did to her was a travesty of our health care system. At the end she regretted the choices her doctors made in the treatments. In the months prior to her death she begged me to give her all the pain pills to end her suffering. By now I was 24 years old. You can imagine how this scene played out. I loved her dearly, I used to chat with her every day until I moved back home to care for her full time until her death. I just could not give her the pills but what a horrible dilemma for me to be in, having to watch day after day, her suffer in so much pain. She had full mental capacity until the very last day. She could have made a better choice if it had been offered to end her suffering if it were available and I have no doubt she would have chosen death with dignity option.
Caring for her ripped my life apart watching as the mom I once knew, was a slave to the cancer/pharmaceutical industry. Early on I would drive her to the Mayo Clinic until she could no longer make the trip. In Minneapolis she had two doctors. I found out many years later that one of them had retired from oncology and had gone into natural medicine (perhaps he no longer believed in what they were doing??) No daughter at 24 should ever have to go through this with their Mom….it was cruel to Mom and it was cruel to EVERYONE who knew and loved her. Her autopsy revealed she had cancer throughout her body, every major organ, every bone, everywhere. She had no chance of recovery. Looking back, it seems to be like more of a science experiment, just awful, my poor Mom.
Back then they did not have hospice, not much for home care (they came in to give her morphine shots.) The rest, all of it was up to me, until hours before she died. She really suffered for much of the 2 1/2 years after she was diagnosed. Tragic. The nausea, vomiting, broke ribs from vomiting, broke bones just shifting her weight in the wheelchair, lost all her hair due to chemo, ate very little, so tough. Mom loved to cook and loved to eat previously. By the end I fed her as well because she could not use her arms. Most of it she would vomit up. She broke her femur at the hospital from an improper lift where her femur was getting thin from Cancer. The dilemma was to amputate or put in steel rods. There were no good options, but they put in rods. She had an incision about 3 feet long down her leg and into the buttock. I had to clean this as well.
Why just why should anyone suffer that much??? I forgot to mention that mom did have a living will but at that time they were one page and brief statement and not really recognized by the medical staff she had.
Dad was WWII veteran and he was very, very active most of his life. He downhill skied, roller skated, biked, danced, etc…well into his late years until getting Bradycardia, which I believe led to his dementia. Well in advance my father had a DNR/DNI filled out after watching his wife suffer so badly. He was very clear: he did not want any heroics if he was no longer able to have quality life.
Dad was in his 96th year when he died, but what he went through clearly was wrong. It went against his wishes which he made when he was clear of mind. Dad had a very bad fall and broke his back and his pelvis. He probably had the fall due to end stage pneumonia which was discovered when he was admitted for the fall (the hospital docs said it was so bad by this time, antibiotics would not heal it.) He had also stopped urinating because his kidneys were failing. He could not sit because of the fractures, so they gave him a lot of pain meds to sedate him, but still appeared to be in a lot of pain. He went in the nursing home for a few days but shortly after they transferred him back to the hospital because his breathing was becoming very labored. I was there with Dad at this time at the ER. I went home to get a change of clothes anticipating the end was near. When came back to ER I was SHOCKED to see that the ER doc put breathing tubes in my Dad! I was furious. When talking to this doc he stated “well he would have died tonight if they did not put the tubes in.” I could not believe he reversed my father’s wishes of DNR/DNI. My dad kept dying in a coma for another couple weeks until his primary care doc came back in town. She was appalled as well. My brother (who had financial POA not medical) also had a part in this but had no legal right to give this doc permission, nor did the doc have permission to reverse the DNR/DNI. By the time we were all there and everyone finally agreed to remove the tubes (the only thing that was keeping dad from dying were these breathing tubes) the doctor said he was brain dead. I don’t really know how long he was brain dead, but I suspect most of that time after they put in breathing tubes. Dad suffered way too much, and his end was absolutely not dignified. He died within about 3 minutes after removing the tubes. Now he was barely recognizable. His entire body was swelling up and filling up with fluids, because he had been actively dying BEFORE they put the breathing and feeding tubes in. His primary care doctor told us this…HE WAS ACTIVELY DYING. But with a room full of equipment I am sure the hospital made a fortune off of this WWII vet, my father…disgraceful. !!!! I never sued. I just do not think I could have handled all that stress, so the doctor got away with it.
I am sharing my Mom and Dad’s stories (my story) in hopes that others will not have to suffer the indignity of all of their deaths. We can and should do better than this.
It, for obvious reasons, has been an issue near and dear to my heart. It’s about being human, it’s about being kind, it is not political, it’s not even religious. I feel if you really believe in a god and you believe in the afterlife, you would want your loved one to go there when they are actively dying and/or have no chance of surviving. And if you do not have a god you believe in, the choice is the same. You do not want to extend their dying. It is not extending life like the health care profession will try to convince you. I have been very politically active most of my life. I have had these discussions with Democrats, Republicans, Independents, all agreed (I know there is a group of “Pro-Life” people who disagree to them I say this.)
Another reason I say life in a coma is no life at all:
Filling in for a therapist’s maternity leave for 3 months (I was a float) I worked at a nursing home that was quite shocking. It had floors of comatose people, some had been that way for 15 years. Being the newbie I was given the task of going to the floor to do ROM (range of motion) on all these people. One little guy touched me deeply and I will never forget him. He had suffered severe trauma to the head as a little boy, from a 3-wheeler. He had all the breathing tubes, food tubes. He needed to be stretched so they could keep his body clean from skin breakdown, etc. He was now an adult, but was nearly unrecognizable as a human, but sadly he still had these tiny little hands and tiny feet. It appeared his body quit growing but he was filled up from the tube feedings, his skin felt like a water filled balloon. There was no reaction to stretching this figure.
I was shocked and horrified that this home was filled with people like this little “boy.” They had a full time psychotherapist for the staff, as you might imagine, they had difficulty maintaining staff and the staff that stayed could visit the psychotherapist when the days at work got to be too much. I think every “Pro-Life” person should spend a few months there. I do believe they may change their ideas of end of life. It is really just an end of the death process and we all die someday. When the end is near we should have the right to decide for ourselves or our children how the end comes when there is no hope.