What is "Quality of Life?"
Definition of Quality: "The standard of something as measured against other things of similar kind."
Long story short- My wife was diagnose in 2019 with AZ. At this time she was still lucid and could understand the road that laid before her and me. At the time I asked her, "what are your wishes? What do you want me to do for you? Her response was, " I don't want to be hand fed, and I don't want to die a agonizing death. That's it only those two wishes.
Fast forward to 2025 January. We began hospice care for DW. Hospice came in and start their care. One thing they told me was, " she (DW) still has a quality of life." Now here's a wonderful lady that I've been married to for many yrs. This my DW (who is now nonverbal all but grunts and growls) that I have to hand feed, give medication for hallucinations, medication for fit of rage, medication for sleep, medication for a bowel movement, I clean her, wipe her, bush her teeth, and the list goes on.
Hospice still to this day says, "she has a quality of life." I just don't see it, Have I failed my wife by not honoring her wishes, by hand feeding her, and letting her die this horrible death for this long.
Sometimes she smiles at me when see looks at me. Is it her way of saying I'm still her I love you or is it her way of saying, "it's okay I'm ready to get on with it."
What is Quality of Life? I don't know anymore.
Comments
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That does not does not describe quality of life to me. Does she take pleasure from some of her oral intake? Is she aware of you and her surroundings, or can you tell? I'm wondering what they base that on. Could you have a frank discussion with the hospice team about what is currently being done for her and your goals for her care? The team includes a chaplain, physician and social worker. Perhaps the group and you can find some clarity. You are doing the best you can for her. Continual evaluation of her status, needs and goals of care is part of that.
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This is a serious issue with end-of-life care for very late stage dementia patients. We had a lengthy discussion about hand feeding in a recent thread (“I want to scream and cry” started by Lgb35).
My DW is even farther gone. You would think she was comatose except for her feeding reflex. She seems to have no conscious connection to the world other than accepting food when you tap her lip with a spoon. She has not opened her eyes in months. She makes no sounds. Other than her feeding reflex she does not move her body independently, her muscles are severely contracted. She made it clear before dementia that she would never want to go on like this.
But for dementia patients there is no way out of this dilemma. It is agonizing to see her like this, but I am powerless to do anything about it both ethically and legally. I envy those whose LO’s pass away of natural causes before they reach this horrible late stage.
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I think you need a different hospice agency. They aren’t supposed to be evaluating ‘quality of life’. They are supposed to be evaluating physical and cognitive decline in terms of whether hospice care is needed. For a person with dementia, that’s evaluating whether they can do their own ADL’s ( shower, eating, toileting, dressing etc), whether they are losing weight, whether they have other issues. My mom qualified for hospice because she needed help showering ( including being reminded to wash), was incontinent, needed help dressing, used a walker, and was on oxygen. The hospice evaluator, nurse, etc never once mentioned quality of life. And if they had, I would have asked for a different person to be sent from then on.
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I live in Massachusetts and have a MOLST form signed by his PCP with all the questions they ask and we answered no, does that mean they can still do hand feeding ????
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This is a real grey area. My mother specifically told me not to hand feed her. When she could not feed herself (or did not want to) with finger foods, we did not hand feed her. She was at the point of falling asleep right into her plate at mealtimes. She was not medicated. I demanded the facility not hand feed her + they resisted. She was under hospice care + I was working with them to move my mom to my daughter’s home not far from there where we could honor her wishes. I moved into her room to oversee her + til the move date but a week later, she died before the scheduled move. We never hand fed her. Certain facility employees voiced we were ‘starving her to death’. That may be, but I knew what she wanted. I was determined to make sure she got the death she wanted.
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What is a MOLST form
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MOLST = medical orders for life sustaining treatment
POLST = physician orders for life sustaining treatment
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@Vitruvius and @Scooterr : Is there any mechanism with your hospice provider to request an ethics consultation. It sounds like you both have moral distress from hand feeding your spouses. Perhaps seeking ethics consultation would provide you a way to stop hand feeding.
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My wife is still able to feed her self but often says she is not hungry, for a while I would feed her and she would eat but after thinking about it what was I really doing. She could eat but didn't want to. My thought was she needs to eat to keep her strength then I realized strength for what. Now when I visit her in MC at lunch time if she doesn't want to eat I don't push her. She is not suffering, it is her choice. My dad had cancer and the chemo made him not want to eat. I did try to get him to eat but he refused. He died sooner then he would have if he had eaten but he never suffered from cancer pain or hunger. He did basically starve to death but it didn't make him uncomfortable and it saved him from the pain that he would have had from the cancer (at that point there was no hope of remission). There is a time when not eating is not a discomfort. I just don't know how to judge that time.
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@Scooterr and @Vitruvius , my heart goes out to you. It must be terrible to have to struggle with this. My DH took matters into his own hands. Five days into his first hospital stay for unmanageable agitation, he stopped eating. Moved to memory care three weeks later and still would not eat. I begged, I pleaded, I brought his favorite foods from home. Nothing worked. He died seven weeks after arriving at the hospital. DH was a physician, and while I respect his choice, I can’t tell you how much I wish he hadn’t made it. That said, I don’t think your dear wives’ “quality of life” is either hospice or the state’s business. I agree that this issue needs to be addressed on the MOLST form, and that an ethics consultation, as @midge333 suggested, is a good idea.
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My mom basically quit eating as soon as she heard she was on hospice from one of the AL staff. ( about a week after she was on it) The hospice staff and I had avoided the word instead telling her she was getting extra help. The AL nurse was on vacation that week. Mom passed away about 4 weeks later. Myself and the AL nurse begged, cajoled, demanded for her to eat for about two weeks until the hospice nurse said to stop.
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My favorite aunt, who did not have dementia, refused a feeding tube after a stroke made swallowing very difficult. Since she was mentally competent, her decision was honored and she soon passed away.
I think if a LO says, while still mentally competent, that she doesn't want to be spoon fed, that decision should be honored. That's what I would do if I were the caretaker.
This situation illustrates the great value of POA with advanced medical directive. I think every adult should have those documents in place, since head trauma can cause dementia at any time.
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Hospice nurses and social workers and chaplains are there to help the caretakers as well as the patients. They say kind things, like "she still has quality of life," to make you feel better. I noticed that all of the hospice personnel who came to my home told me what a great job I was doing and had done for years as caretaker. I suspect they were trained to do that.
In other words, take their statements with a grain of salt and make your own decision as to what constitutes quality of life. Biologists can keep a piece of liver alive for years in a bottle of nutrients, but that doesn't mean the original owner of the liver has quality of life.
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Unfortunately, for my wife, it is too late to change her advanced directive. I did not know that hand feeding was an issue until my wife was admitted to MC and I saw it being done. I was shocked. I know my wife would never want hand feeding…
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8 years ago today my wife passed away after 11 year battle with Alzheimer's . She went in the hospital on March 19th at that time she was eating walking and talking . While she was in hospital I don't know if she had a minor stroke or something they didn't think she did but when she came out 10 days later she wouldn't eat, talk, or could no longer walk without help . We had talked about what we wanted for care long before Alzheimer's came along and that was neither one of us wanted to be kept artificially alive by a machine or by being hand fed or with a feeding tub. At first I did try to get my wife to eat and when she refused food I tried smoothies she would drink two or three of these a day on her own through a straw as time went on she drank less and less. I don't think she suffered at all, she slipped into a coma on Monday and Friday At 4:15 in the morning she passed away . I have no regrets About not trying to feed her or getting her to eat. I fulfilled the promise that I made to her and that gives me peace. To me somebody hand feeding you is not living, it's not quality of life, it's making some nursing home rich and making your loved ones suffer. As a Christian I believe that if God wanted her to live he would have gave her the ability to keep eating and to feed herself. It's funny how things get screwed around in our lives. We look at abortion as it's a woman's right, we look at helping somebody end their life with dignity as the states right (not wanting to be political just a point.) Yesterday I sat down with my son and my granddaughters. I showed them my directive about not wanting to be hand fed. I even told them if you have to bring me home and prop me in the living room and walk away. I know that that would be hard on them And I hope it never comes to it, but if it does I pray God would give them the strength to do it.
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I was lucky that it was easy to see that my mom, although she had to be hand-fed, really enjoyed her meals and food gave her pleasure, which to me equaled quality of life.
There would be no way I could have lived with myself if the food wasn't offered. Deciding to hand-feed or not was not something I was going to decide. The food was offered regardless.0 -
This is a really gray area.
My 2 aunts live(d) in MA. P was guardian to C who had dementia, and the experience scarred her. C would go through phases in the later stages of dementia in which she would stop eating and drinking for a week or so before resuming as if it never happened. She did this at least 3 times before the final episode. P, or another family member would come at lunch and handfeed C for the last 2 years of her life. Staff did hand-feed, but they didn't allot more than 20 minutes, and they fed 2-3 other residents together which wasn't ideal. P would take an hour and make sure C got the sorts of foods she'd previously enjoyed.
After C's passing, P had a POLST drawn up with an attorney to include no hand-feeding. She told me that having it drawn up by an attorney was important. I'm not sure how true that is. Just about every time we speak, she reminds me of this. She does the same with my cousins.
HB1 -
Thank you
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Thank you to my friends for all your comments and suggestions.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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