Hank Dunn, a hospice chaplain, covered some of the ground in his book Hard Choices for Loving People at a caregiver's conference. He provided eveyone with a copy of his book.
End of life decisions are much more about emotional and spiritual issues than medical, religous, ethics or legal issues.
You need to decide what is the goal of medical care for someone with late stage dementia. Is it: 1. Cure 2. Stabilization of functioning 3. Preparing for a comfortable and dignified death.
If you want a peaceful death at home for yourself or your LO you need to do a lot of planning. If you don't plan then expect death in an ICU or emergency room.
CPR. When considering whether to have CPR, consider that the following group of people rarely survive CPR, and if they do are likely to suffer brain damage afterwards: • More than 1 or 2 medical problems • Do not live independently • Have a terminal disease
CPR is often a symbolic gesture and to some families it means that they tried. While Dunn discourages CPR in terminal diseases he also understands there is another view and the attempt can bring comfort to some families.
The health of people are in nursing homes is already going downhill, so expect this to continue in a nursing home.
If a doctor suggest withholding or withdrawing treatment, it means that the treatment offers little medical benefit. The don't won't say "let's stop this treatment" but instead will discuss withdrawing it.
It is usually easier for a spouse to make these decisions than children or distant relatives. He mentions the "Daughter in California" syndrome, where a distant child makes demands on what should be done. In California it is called "Daughter in New England" syndrome.
IV fluids and feeding tubes do not quench thirst.
The stopping of eating might not mean the end of life. It can be from depreession or medication.
There are benefits to withholding artificial hydration in a dying patient. Endorphins ar released as the body dehydrates. Artificial hydration might prevent the endorphins from being released. Please not his emphasis on artificial hydration. This usually means IV. He things moistening the mouth with a spoung, etc is fine. On Tube Feeding. 1/3 of feeding tubes in the US go to advanced dementia patients and probably does them more harm than good. It does not reduce the risk of spiration pneumonia and perhaps increases the risk. Survival is not prolonged, the patient does not live any longer. Tub feeding increase the risk of infections. Careful hand feeding is a good think.
Dunn is not against all tube feeding. There are many people who need the procedure and can live healthy and active lives. But he is opposed to it for the terminally ill because it does not provide them with comfort nor improve their health.
Thanks so much for your post. It confirmed many of the choices I had to make when the Hospice doctor told me my dh had maybe a week or two at the most to live. He also suggested medications could be withdrawn and I totally agreed with him. Then the real shocker came when next he said: You can also withhold food and water and that decision is yours. He also told me without food he might live a couple of weeks and without water maybe 5 to 7 days at the most. He told me this on Thusday and my dh died the following Tues. I did withhold both water and food. I used the sponges to wipe his mouth and keep his lips moist. I have never regreted what I did and I always felt like it was what my dh would have wanted because we had discussed it often in years past. Preparing yourself for the end is so important. You can't just pretend it won't happen, because it will. You need to be prepeared and know what you want to do, because it is such a personal thing between just your spouse and you.
One of the helpers I had that worked with the visiting nurses association and she was very skilled indicated to me that she didn't like the position I took and told me so...her words were..."How can you do that?". She was almost mad at me for not giving my dh water or food. I finally had to tell her, he is my husband and I know what he wanted and this is what I am doing. Then I asked her..."would you want to live like this??"...And, she said..."No". No one wants to linger a week or two in a total state of knowing less and less by the hour and maybe knowing what is coming. These decisions are never easy...so think about them ahead of time so you are prepared and know what your answers will be when the time comes.
I'm horrified by that figure that 1/3 of feeding tubes go to advanced dementia patients. I went looking for a source for the fact online, and found this educational presentation for doctors: http://healthcare-professionals.sw.org/resources/docs/division-of-education/events/family-medicine-review/1115_PEGTubes_Pfanner.pdf It says in some cases feeding tubes are placed because the hospital fears that the nursing home won't take the patient back without a feeding tube. The nursing home (wrongly) thinks that feeding tubes help prevent pressure sores, which are a major item in the grading of nursing homes.
Yes, we have talked about this book here before. You used to be able to get a free pdf of it from this site: http://www.hardchoices.com/ I see now that it redirects you to his site and they charge for it now. I think it was Nora who first suggested it to me back in 2008 when I joined. A good read and a lot of our members have found it helpful with end of life choices.
In the end, it is only you, your God and your conscious. It has to be something you can live with and therefore no right or wrong, just another very individual and personal decision.
palliative care. This sounds exactly what happened as my sister was dying. Thanks for all that info paulc. And Judith KB, though my heart breaks reading your post, I am so proud of you that you knew what was the right thing to do.
A wonderful book called Final Journeys by Maggie Callanan, a hospice nurse, describes this all so well too. I have read it over and over, right after my sister died it really comforted me.
Thank you for bringing up this subject...something that's very hard to talk about
Just a few weeks ago when Dh recovered from pneumonia i was asked if this happens again, what did I want to do...treat it of let them make him comfortable, pain free and let it take it's course.....'
thank you Paulc...I don't know if I could read the book, but reading it here from one that is living this journey like us makes it easier to take in...
Judith...as sad as it was reading your post,you knew what you had to do.... I hope I have the same courage and strength, to make such a difficult desision. The kids say, they back me up 100% whatever I decide...I know in my heart DH would not want to go on living in this AD life. I dwelled on that thought for quite some time after that, cried buckets full and had to put it out of my mind ...but when the time comes, who knows on the day.. I like to think I know what I need to do too.
Coco...like Nikki says...it is an individual and personal decision. Not everyone can do the same thing. But, being prepared and knowing what you want to do before that important deciswion has to be made is so important. My heart breaks also for those that say....I don't know what I would do or I can't make that decision. The only thing I can say to them is try and think about what you want to do before you have to make that decision because it will something you will have to think about the rest of your life.
Your experince with your sister will help you so much...just another gift she left you Coco...I know her spirit is with you every day and that is very important.
JudithKB, you were strong and brave and unselfish. I don't know how anyone could think that we could let our lo's die and not have our feelings run amok...sadness, relief, and crippling grief. I want Lloyd to go here at home with me holding him. That is what I wish. And I will do NOTHING to prolong his life. Anyone who disagrees can go away and stay away.
My sister died two weeks ago. I had power of attorney for her health care instead of her immediate family. They agreed with her decision. When there was nothing more to be done we tried palliative care for a week or so, but I knew, and the doctor knew, that she wouldn't last much longer. Two days later she was under hospice care. She didn't want to eat or drink by that point; it was not a matter of whether we withheld them. She died a rather peaceful death six days later with her children and I occasionally just swabbing her mouth and lips with the sponge. I'm very sure we did the right thing.
Thank you paul for sharing this info. It is important... but it also makes me want to cry. All the sudden I guess I have grown-up or put on my big girl panties as some here say. I really chafe at them or they at me... so much we have to deal with alone. Due to my dh heart problems... congestive heart failure, atrial fib it all becomes such a grey area... He was in the hospital 12 days last winter and since then has been home doing pretty well but still confused, incontinent, weak ... yet when I take him in the car he constantly clutches at the handles like I will kill him with my terrible driving.... I have never had a collision or even a close call...but he wants to live very much. He does have a lot of awareness still. I will not worry yet about the end. Things have a way of working themselves out but I will definitely read up and at lest know the options. Thanks again and my heart goes out to those of you who have had to go through these end-of-life issues.
Bev I as also sorry you lost your precious sister, oh how I know how you loved her. I still go to Dianna's legacy site and post little notes to her. HOW SHE KNEW how I would need her now, and her help is getting me through this time of not being able to work.
I hope that you can feel her love and presence always.
Coco, your words are comforting as I know how you feel after losing your sister. My sister was the only person I could really use as a sounding board, although this doesn't mean I have no one else. I do. But I could tell her anything and not be judged.