First, no problems or dire diagnosis here. Just interested in the take of others…especially LONG term T1s.
If your doctor gave you an end of life diagnosis, what would you do: fight like HE double hockey sticks, go with the flow of medical advice, tests, treatments, or just stop and say “I have had enough!”
Honestly, I don’t know what I would do.
I can tell you what my mom did that was extremely helpful to those of us who loved her. She discussed the circumstances of her death that she preferred. She said she wanted to die at home and she wasn’t interested in heroic efforts. There were points along the way when she was in the hospital or undergoing some intensive treatment where she told me clearly “that if this was going to be what her life would be like” she wasn’t interested in prolonging life.
That gave me enough guidance to make health decisions for her when she could no longer make them for herself. She lived with Type 2 for more than 25 year and experienced complications. We worked with hospice to provide her palliative care at the end, which is still a form of healthcare.
Whether long term T1 or cancer or aids, the person diagnosed decides what they want to deal with, and the care giver hopefully has the strength to decide what is best for them.
Thoughts from experience
I just went through this as my 95 year old aunt passed last year. In the end it all came down to quality of life. We talked a lot about things in her last years. I had full power of attorney and we had a living will and advance directive that laid out what measures she wanted. The advance directive was mostly to communicate to the healthcare system her desires if I was not available. Over the last few years we went through a series of decisions about not testing or treating various conditions. She ultimately had diabetes, often having blood sugars over 200 mg/dl. Some of it was probably due to her long-term steroid treatments. The steroids made her feel well and contributed to her quality of life. We never tested nor treated her diabetes except in dire circumstances during hospitalizations.
In the end it all came down to her wishes and her quality of life. She didn’t want to be in a rehab center, assisted living or a nursing home. She wanted to be in her apartment. And when we got her back in her apartment I always handed her a beloved fine scotch because that is what she loved. A drink or two a day. Something she would be denied in any of those other settings, but a that made a difference for her. And ultimately it was a difficult conversation when she could no longer fully take care of herself. The last year for her she lost much of her quality of life and there was nothing any of us could do to stop it. But we made decisions to get the best quality we could.
In the end, she collapsed one day while I was out of town. Although I had filed all the paperwork with the hospital and care workers, ultimately her wishes and my demands as her power of attorney were ignored. She was not taken to the desired hospital and she was not treated according to her wishes and my demands. I’m still a bit angry over that to this day. The system is frankly a bit broken. But at least I can look back and feel like the last years of her life she really did get to make her own decisions and really achieved a pretty good quality of life even if the last hours didn’t go as she wanted.
So I personally took this experience as a lesson. First, it is about quality of life. At the end I don’t want heroic measures that may prolong my life briefly but have terrible effects and give me nothing in return. Second, the best thing is to have one or more my close family or friends whom I can entrust and empower to work with you over time to make sure that my wishes are fulfilled, particularly when I may become unable to enforce my desires on the system. And third, despite best intentions, the healthcare system can and will mistreat you, so if you do have advance directives you need to make sure there is no chance anyone can “miss” them. They should be tied to your medical ID, filed with all your doctors, the hospital, posted on the fridge and be known and carried by your empowered family and friends.
At first I was not going to respond to this thread but it seems to be drifting away from your question?
In February 2012 I was getting a check up and a MRI because I had Gallstones. When they did the scan they found a 1" tumor in the upper right lobe of my liver. Normally my doctor just posts my test results on My-Chart but after this scan I received a email saying come in we need to talk. And at this appointment with a Doctor, Friend of 20+years my wife and I where told that I have “Hepatic Cellular Carcinoma”. My doctor was so upset during the meeting that he could not speak and had to get a fellow Doctor to come into the room to help him, we where all in tiers. He sent me home with an appointment to see a Doctor who specializes Liver Cancer (about 1 week form my first Dx) This doctor started his conversation with me by saying maybe I can buy you some time…and I asked him if
I do nothing whats going to happen and he said you may have as little as 11 to 12 months. He then told me that I needed to start trying to get on the transplant list, it was my only hope for prolonging my life…I went home gathered up my family and we all prayed for guidance and strength . This is the short version of what has happened since my Dx. In may 2012 I received approval from the US Department of Health and was placed on the transplant list in June and on July 23 I received a healthy liver form a individual who’s life ended too quickly…but one thing she was able to plan was gifting her organs…This persons gift has prolonged my life for 3 years and I have no idea if I will live one more day or 20 more years…My only job has been to praise my lord…I have learned along this journey that my strength and happiness comes from my dedication to the Lord and my family.
My endo (at the time) gave me a year to live in 1991 due to liver failure (Hep C combined with diabetic complications) I didn’t care for the prognosis so I turned to doing my own research for other options–the beginning of a long love affair with doing my own research 
I stopped drinking alcohol. I stopped using artificial sweeteners and all forms of sucrose. I began a daily meditation practice. I began taking turmeric, blessed thistle, vitamin C and doing periodic liver cleanses with organic lemon juice and olive. I met, fell in love with, and married my husband (Just one more GREAT reason to live, right?) and he provided me the support to rest as needed.
For about six months, I got even more ill–more jaundiced, increased hepatic comas where I would just quietly pass out for a bit and digestive disturbances–throwing up and pain. Then, I slowly got better and better. At the two year mark, I went back to the endo, and she said the condition of my liver was vastly improved…She said the Hep C had gone into remission and she didn’t want to know what I had been doing, but to keep doing it. Interesting, right?
I continue to be very careful about what I require of my liver to process and filter, and take several liver supporting supplements… that is how I deal with an “end of Life” prognosis…and when it does happen, I want to be “planted” under a tree 
[quote=“Sue27, post:1, topic:46587, full:true”]
First, no problems or dire diagnosis here. Just interested in the take of others…especially LONG term T1s.
If your doctor gave you an end of life diagnosis, what would you do: fight like HE double hockey sticks, go with the flow of medical advice, tests, treatments, or just stop and say “I have had enough!”
[/quote]I don’t know what I would do. I’d probably fight like HE double hockey sticks, But it would also depend on those tests, treatments, and what quality of life would be like while I wait for the end. I would consider my people as well, I don’t want to hang on and need 24/7 shenanigans that would disrupt the lives of my loved ones.
After surviving a couple of lucky to be alive and able troubles, I took the time to prepare an advanced directive so that my wishes would be known in case I could not communicate them. May the end of our lives be far and away 
I’m still relatively young (in my 30’s), so I still imagine a circumstance, like this, popping up from traumatic injury. Although, there have been several incidence of cancer in my immediate circle of friends. I still can’t figure out how to write the health directives. I think I would create the line, not to be crossed, at being on a ventilator for more than a week or two. Thats the best I have been able to come up with.
mohee001, I am much older–63. I have a DNR order (ask your doctor–they all have the required health directive forms,) but who will know if I do not have an advocate by my side. Maybe I need an additional medAlert around my neck for that? Without my husband by my side to advocate, the commonwealth of VA has no requirement that a DNR requirement follows you
Tis a conundrum…
Some types of medical alert identifications allow show a DNR symbol and allow you to file your DNR order as an electronic part of your record so that it can be pulled up by both hospital and non-hospital personnel. Unfortunately I did not do this with my aunt.
Brian, in the great world beyond, maybe. At INOVA for example, I have seen a known DNR request fail. Staff is terrified to not go as far as possible, even when impossible to save. In Iowa, with an advocate by his side, my dad was given a large orange card with DNR on it to cart around, even when he was just there for tests. At the end, I had to tape it to his door, and his bed. I am not convinced the medical community has truly embraced electronic medical records.
I carry a small disc with all my basic medical information in my wallet. I have offered it to several new docs, but always get a “deer in the headlights” look and am handed a five page form of med info to fill out.
Even if you have a DNR, the EMT’s aren’t lawyers, so they tend to error on the side of saving people. DNR’s are tough to enforce, at least in the short term. Some people get DNR tattooed on their chest, just as a ‘heads up’ to CPR providers. Of course, that is not a legal document. Some medics will respect it, some won’t.
You right, I’m younger. If I go, its more likely to be traumatic injury. That’s why I’d give them a couple of weeks with the vent…just in case they can win me back from a car accident. My nutty family had my uncle on a vent for a month or two before he died from a stroke. CPR got him back four times leading up to his death. It was ugly. My family doesn’t give up. They are relentless. No good.
It’s really important to have a medical power of attorney and someone to execute it for you. If your medical team says you cannot make decisions they will make them.You cannot carry a piece of paper that says just let me die. My wife and children can execute my medical power of attorney. Before I could be placed on the transplant list (the government required a medical power of attorney). You cannot decide to die if your not dying and if your dying your not going to be in a position to make the decision so you need someone to stand in for you and say yes or no…It’s the law
After 53 years as a T1, I DON’T GIVE UP. I AM RELENTLESS. OFTEN NO GOOD. But I survive.
HMMM. You are so right. I have both a DR and a Medical Power of attorney with my husband and then my son listed to execute it.
But again, I had a medical POA for my dad. Before I could arrive to make decisions, they had been made. Sometimes the law has great ideas, but bureaucratically they fail.
Like diabetes treatment, LOL! I don’t have any plans. I always figured I’d die by the time I’d be 40, although I’ve had to reevaluate that since I turned 40 7 years ago. But it’s not something I spend any time on.
Yea, AR. I was told by my grandfatherly pediatrician at 10, that I would die before 50… Since then I have been with my mom and dad at death. Made me reconsider many EOL thoughts.
There is a law that provides for anyone to decide what care and lack of care should be done well before they get into a situation where they can’t communicate their wishes. The Federal Patient Self Determination Act was enacted in 1990. Hospitals, nursing homes, home health agencies, and HMO’s routinely provide information on advance directives at the time of admission. They are required to do so under this Patient Self-Determination Act (PSDA). Each state has it’s own criteria but the law is solid.
If you are concerned you should complete a Health Care Advance Directives for your own health record and keep a copy at the house, give one to your doc / providers, and give one to your next of kin or whomever. Ask your doctor, your health care provider, your insurance, your attorney, the hospital, your estate planner, blah blah blah for assistance if you don’t know how to get one on your record. It’s like a will but for your person instead of your stuff. Well worth the time and effort in my opinion.
DNR is just one example of an Advanced Directive. There are many more that could be considered. EMT look for AD instructions more and more today before transporting incapacitated patients. They are usually on the fridge (an older person showed me this gig!).
No one is stopping anyone from making her wishes known. And the folks who need to know CAN know. Take a minute to fill yours out, and take care everyone
I have found with my experience with parents, that Advance directives, although a very uplifting idea, do not travel with him through the health care system. In Iowa, a large orange card is to be fixed to the patients record, wall chart etc, and follow with him at all times. I had to keep charge of the only one Dad was given,.
I have done all the paperwork, Karen, but in my experience, the healthcare system does not pay attention, Maybe ObamaCare computer records will do a better job.