My opinions about end-of-life and the importance of quality of life have been greatly influenced by my experiences, starting at a young age. When I was 13 my mother died of stomach cancer. It was preventable but the doctors didn’t listen to her when she told them about her symptoms. I watched her suffer and die, leaving me, my 15 year old sister, and my 6-year old brother. Very traumatic, especially for my brother.
My father remarried and in the early 2000s my stepmother, who was in her 80s, developed symptoms of Alzheimer’s disease. I became her primary caretaker. Her doctor offered very good advice and I trusted him and he subsequently became my doctor. My stepmother was in a nursing home and I inquired about hospice services because she was declining rapidly. Although I had Power of Attorney, the doctor said that she wouldn’t be able to get hospice services if she was in a nursing home, because they would probably resuscitate her if she had a cardiac arrest. So I brought her home in 2002. I had to go through many legal and court proceedings to achieve this. At one point I specifically asked the attorneys not to use the word “Alzheimer’s” and the court did it anyway. Towards the end when she became incontinent I moved her back to a nursing home. I visited her daily and would take her outside and she would smile so I thought maybe that was enough. I’m not sure now. The day she died, she moaned and struggled. It’s very hard to witness.
In 2009 my mother-in-law, who had been living in Florida, came up to visit us. She had immigrated to the country and while she had some difficulties with the language, even at the age of 91 she was in her right mind. She was very ill with pneumonia. We took her to an excellent city hospital and the doctor and the hospital said that she needed heart surgery. Perhaps because of her background and culture, she trusted them and agreed. She expressed that she wanted the surgery, but no one explained the risks and benefits to her. They did the surgery and Medicaid paid the bill. After the surgery her organs began failing. She was on a respirator and a dialysis machine. She was in the hospital for 4 weeks, during which time she was intubated, and was put on Haldol, a powerful antipsychotic, because she was fighting the respirator. However she didn’t say “let me die.” She had wanted the pneumonia treatment and wanted the heart surgery. No one spoke to her sensibly. My husband was assigned as the healthcare proxy, but she didn’t have any advanced care directives. Understandably my husband found it difficult to make end-of-life decisions for her. I believe that people need to be provided with guidance and education. I asked the doctor “what kind of quality of life will she have?” He didn’t seem to want to address that. It seemed as if they wanted a success story. A social worker should have told us. After a month in the hospital they finally sent her to a nursing home about 2 hours away from us. They were still giving her dialysis there. When I visited it was very hot and I turned down the heat. She died at 2:30 in the morning. She never expressed what she wanted and had lived alone for many years and I believe that she got attention from doctors and tended to overly trust them. We didn’t think of filing a lawsuit because she had no directives.
Because of what I’ve seen and experienced I have strong opinions about end-of-life issues. I personally don’t want any antibiotics, fluids, etc. I have copies of my documents everywhere. I paid a lawyer a lot of money to get this in order. My kids don’t want to talk about any of this. My doctor, who I have trusted and liked over the years has just retired. Perhaps that is better anyway, as his affiliation was with a Catholic hospital and I would have been worried about whether the hospital would honor my wishes. I have seen that people choose to die with people or without, which I find interesting. You hear stories about people who appear to wait for people to arrive or wait for people to leave before they die. I have heard of an organization founded by Henry Fresko-Weiss, which provides “Death Doulas” for people who are dying, where end-of-life rituals are created for the person, easing them into the final days, and that sounds very comforting.