This post is a personal one about end of life issues. My family went through a very difficult period last year when my mostly healthy mother-in-law became catastrophically ill. She was placed on hospice and died this past January. This is my personal recollection of what we had done. There is a very critical need for your loved ones to know your final wishes and to have them in writing! Death is hard for the survivors, don’t make it hard for someone who is dying! I am reposting this, as another family member has suddenly come down with a horrible diagnosis.
My mother-in-law(I called her Mom) was a very nice lady. She could be tough, and never hesitated to tell you if you did something that pissed her off. As I am the same way, we had a mutual love and respect for each other. Mom became a widow at a relatively young age. My father-in-law died at age 55 from an aneurysm. Mom was only 53. She remembered how badly my father-in-law died. He suffered for a few days and it left an impression on us all. After he passed, she wrote up a living will. This was 1988. It was an advanced directive, long before hospitals even started asking about such things.
Last June 2009, Mom , a diabetic, went to the foot doctor. When she came home, she didn’t like the way her left big toe felt. So she cut the toenail herself. Any diabetics reading this should take this as a warning! She didn’t tell us about doing that until it was infected. It was so infected that she had osteomyelitis-an infection of the bone. Osteomyelitis can be a nasty infection. It can spread like crazy, and can also infect your blood stream. Mom had to have her big toe amputated, as the infection was spreading and the very strong antibiotics were not working as well as expected. She returned home from the hospital, had the visiting nurse come to do dressing changes the first few days, then I was doing them. Her foot was healing great. The doctor was pleased with how it was healing. Things looked okay, for a short while. One month later, she collapsed at home. After we got her to the ER, she developed respiratory failure and went on a ventilator. Unfortunately, it took 9 minutes to intubate her. She was stabilized and sent into the ICU. She was able to get off the ventilator 20 hours later and when she woke up, we noticed she couldn’t move the right side of her body. I asked the physician to get a neurologist to check on Mom. They did a CT scan, then MRI. They were both negative for a CVA(stroke). But as the days went on, Mom’s speech was slurred and garbled, the right side of her mouth was drooping, and she couldn’t move her right arm or leg. They kept insisting she didn’t have a stroke. She also got aspiration pneumonia, so swallowing food and liquids was out of the question, at least until she could get speech therapy. We checked her living will and it said a feeding tube was acceptable if there was a chance of meaningful recovery. Mom had been driving a week before she got so sick, so our hope for recovery was not too unrealistic. We checked with the doctors and they felt at this time she would be able to recover. So the feeding tube was placed. Then she got a super infection- MRSA-Methicillin-resistant Staphylococcus aureus. It infected everything. It was in her blood stream and also in her heart and brain. The infection continued, but stabilized. Mom was sent to a nursing home. She developed C-Diff (think of diarrhea that smells like rotting fish) from all of the antibiotics she had needed, then she developed gangrene in her foot. She had six trips back to the hospital during this time-each time she presented to the ER she was sicker and weaker than the previous admission. After several attempts to cut back the infection and save her leg, we made the horrible decision to have her leg amputated to save her life. This was done to prevent the infection from spreading again. After that, she ended up back in the ER on her 75th birthday-December 25. She was hospitalized and I knew that the physician and social worker were going to be talking to my husband and I. They waited until December 26. It was a reality I had been warning my husband about for a month or so. The physician and social worker asked about making her a DNR-Do Not Resuscitate. They informed us that there was no hope for any recovery, something we had been aware of after the amputation. We called our family members and told them that we were going to put Mom in hospice. It was the most loving thing we could have done in the circumstances. Even though my husband and I were the Medical Power of Attorney, we had to contend with his sister and her wishes. We tried many things prior to the hospice because we thought Mom could recover. Finally, we had to ask ourselves-“Are we doing these constant medical procedures for Mom, or are we doing these things to make us feel better?”. Often, just because a medical procedure can be done, doesn’t mean that it should be done.
To me, Hospice is the ultimate act of love. You have to be willing to acknowledge a loved one’s mortality. We all have mortality, but knowing that someone’s time is near gives you the option of letting hospice make the person’s final days pain free, dignified, and full of love. The hospice support staff was wonderful. The social worker called both my husband and his sister, even after Mom passed away. The hospice nurses gave Mom pain medication to combat the awful pain that comes about with non-healing bed sores, and the poor circulation in her remaining leg. Mom’s every need was accounted for, as were ours.
She died January 13, as the sun was rising on a beautiful January morning. We realized that at that time last year, she would have been up and been on her 4th cup of coffee already. She was always a morning person. We cried, we laughed, we thanked her for all of the joy she had brought into our lives. I thanked her for my husband-he was so strong to make this ultimate act of love-allowing Mom to die with dignity.
My story is to counteract all of the crazy ideas of ‘death panels’ and ‘killing Grandma’. We were presented with a heartbreaking choice, we chose what was best for Mom. I hope she is up in heaven, wearing her high heels and on her 4th cup of coffee!
Please make sure family members know what your wishes are. If they don’t and there is no advanced directive, everything can be done-including a feeding tube and dialysis. As a nurse, I have seen too many patients that have their lives prolonged artificially for no other reason than the medical team did everything because there were no advanced directives. The quest to preserve life at all costs does not take into account that death is a part of life. It also causes very sick and frail people to be subjected to what can amount to torture. In healthcare, the term ‘outcomes’ is used. Sometimes a peaceful, pain free death is the best possible outcome.