Ray, if Carol doesn't know already, getting hospice will surely fill her in about her situation. Dunno if its the right time yet, a decision you'll have to make. In my dads case his mind was nut all there (94-95 years old) so he didn't understand why he qualified for hospice or what hospice meant. I guess because he was comfortable RN's came 1x/week maybe 30 minute visit each. Nurse's aide came 2x/week for about 40-60 minutes. Social worker maybe once every 2 months. Doctor just once in 5 months. I'm sure if Carol needs it this schedule could be modified according to her condition. She will be required to call hospice for any emergency, where in most cases a RN will respond and call their own doc if need be. Any meds/equipment they will supply, usually delivered by contractor. Hospital bed, wheel chair, bed pans, almost everything so thats the good part. Nurses aide would change bedding, even cook a little if supplied with the ingredients, sponge baths, so a great help there as well.
If Carol doesn't know how bad her condition is, she'll know soon enuf.......I know you said no one told her so thought I would bring this up but you gotta do whats best for her. My wife's family didn't fully understand how hospice worked and sometimes regretted their decision to get it. Mainly because they had signed that medical waiver for no life support/resuscitation, it was very hard for them to understand and thought it could be repealed if they changed their minds. Hospital provided a translator but that left me out of the loop when things were decided. DW's family all born/raised in Korea so their english is very limited and mother was comatose at the time. Hoping all goes well. Val, let us know if something I've said is not accurate, I understand how different situations may have different types of care.
Hospice will tailor it to the individuals needs. I brought my cousin here to my home for hospice. It is a long story, but boils down to: we could have: 1) put him in a hospice as an inpatient (I didn't want that, and he wanted to come home to California) 2) kept him at his home (not a consideration as I couldn't walk well with my knee) or 3) bring him to me. We brought him in, but I had spent 11 days with him mostly around the clock giving pain meds, anti-emetics/nausea, bathing him, feeding him, I did it all and at the end requested help so they brought someone in 24/7 so I could get some rest. He died the first night I tried to get more than a few hours of sleep. They supplied the bed and everything needed for him to pass at home. My choice on that, I wanted family with him. He was awed and amazed at how we all came to help him, but family is family and I was the one with the skill set to handle it. And when I needed more help, hospice provided it around the clock.
You do indeed sign a DNR, which means "do not resuscitate" or provide heroics in the hospital but does NOT mean "do not treat". It means you have made the decision that treatment to prolong life should not be given, and only treatment to help the patient pass with dignity is provided. My cousin had gone past the point chemo would help, but was given all comfort meds needed. When it was his time, we let him go without all the drama of sending him to a hospital that had no hope of doing anything other than extending an already painful life. It was the best outcome for everyone. He simply went to sleep when he was ready, and did not wake up.
I also put his brother, my other cousin, in hospice but he lived in a custodial home so I was not able to spend his last time with him; he died within one day of me signing the order. He was diagnosed with end stage lung cancer, I was called, I came right away to sign the papers and he passed. He had suffered a stroke previously, so didn't really communicate his discomfort well and by the time the cancer was found he was too far gone for anything and basically on deaths door. Had I NOT signed the papers, he would have had to go through the whole resuscitation thing, which would have been painful for him and would not have helped but maybe to extend his already painful life a few days with a tube stuck down his throat forcing air into his lungs, in a coma. My sister chose the same thing, as did my mother. We believe that prolonging suffering with machines when the doctor has already explained that no cure exists is not something we want to pursue, and in all cases it was cancer that took them. We believe that passing away with family around us provides more dignity. It is how people used to die before people like me had ICU's to work in. I know very well what I do to patients in ICU, it isn't pretty and it isn't painless so I would never want my loved ones to have their life
artificially extended with no hope of comfort or dignity at the end of their life. Don't get me wrong, ICU does wonderful things for patients, but we cannot provide a miracle. That is our choice,
everyone has the right to decide what they do or do not want done. I respect everyone's individual choices at all times.
I am sure Carol understands by now where she is in the process of life. Just the trip to see her daughter without any more chemo told her all she needed to know. In fact, if you wanted to, you could have hospice even where you are now and they will send an RN out to go over meds and deliver whatever she needs to stay comfortable where you are. When you return home, you can transfer the care to another hospice (which is what I did for my cousin from Arizona to California). You will never run out of pain medication, you will have an RN on call 24/7 to answer questions or help you. You will have information from caring people who can help you through the emotional process of losing a loved one. You will have the choice of where you want her to pass. The only thing they ask is that you do not freak out and call 911, you call them first. If you choose to call 911 and have her taken to the hospital, the act of calling 911 terminates the hospice and sends them to the hospital, so once you decide on hospice it doesn't mean you have given up the right to hospitalize your loved one. I rescinded hospice for my cousin and knew exactly what I was doing when I did it. It was my cousin's choice to see my brother before he died, he needed a blood transfusion to live long enough for that as my brother had to come home from Korea and as soon as his goal was met, he was brought right back home and I put him right back into hospice where he passed away.
Sorry so long, but I feel very strongly about end of life issues, having dealt with all kinds of families and patients during this time. It is always the PATIENT's choice which must be respected. Some will choose hospice either at home or inpatient, others will want everything done no matter what.
