My grandmother is almost 89 years old. She has been diagnosed with vascular dementia, and has been declining within the past 5 years. For about 3-4 years now, she has been in a memory care/nursing facility. A couple months ago, she had a stroke. It was considered moderate, but left her unable to swallow, walk, talk, etc. She doesn't show any reactions or emotions- doesn't seem to recognize anyone, show signs of pain, cry, etc. After her stroke (because she couldn't swallow), we had a feeding tube put in to see if she would make any improvements with swallowing, talking, moving, etc. She has not. Doctors estimate that she swallows 20% of her pureed food daily. She is being supplemented with the feeding tube. She is under palliative care, and they have asked if we would like to move her into hospice care. They said that if she is in hospice care, they would wean her off of the feeding tube, and focus on solely keeping her comfortable. They said that she IS medically stable- she is not actively dying, and not rapidly declining. I (and my family) do not want to prolong her suffering, or for her to merely "exist". We are unsure if we should or should not put her into hospice care and wean her off of the feeding tube. I'm so afraid that if we pull the tube, she will starve to death. I do not want her to feel hungry, starving, etc. I couldn't imagine a worse death for her- to slowly waste away. Palliative care made a comment about how sometimes when the remove the tube, the patient will try to eat more on their own, which further makes me think that they feel horribly hungry and malnourished. I DO NOT WANT THAT. Ugh. Does anyone know if there is a way that hospice care can make them NOT feel hungry, etc? My grandmother is the most important person in this world to me. I want to make sure that she is absolutely comfortable and not suffering in any way when she passes. I want a dignified end for her. Please help.
Did your grandmother ever discuss HER preference about what she would and would not want at the end of her life? Much like Alva, my mom was very vocally against anything like a feeding tube.
I suggest strongly you reach out to hospice and put this all before them. Tell them you are only looking for information regarding feeding tubes at end of life. It doesn't obligate you to engage them just because you reached out to them for information! If you don't like what you're hearing from them, then don't engage their services. As Joanne said, my mom's hospice didn't encourage us to withhold food; rather they let mom decide how much she wanted to eat based on how hungry she was.
I would also suggest you talk more in depth with GM's medical team. I would specifically ask if she is swallowing 20% of her food, is that enough to keep her from painfully starving to death, which seems to be your main concern. It could be that the 20% she is able to swallow is enough to keep her comfortable. The last few weeks of my mom's life she ate less and less; she was also having trouble swallowing, and everything was "dry", even stuff covered with gravy. But she never complained about being hungry, and I let her eat however much she wanted. Frankly, as the end came, I was more worried about complications from her eating too much rather than not enough.
I hope you can find an answer that will give you and your family peace. I am sorry that this is so difficult for you. (((hugs)))
Your worry is now whether she will feel hungry if the tube comes out and she wastes away feeling hungry. You’ve been told that the opposite might happen, and she will start eating again. If she doesn’t, on hospice care in the end stages of life she is most unlikely to feel starving hungry. As the body closes down, it does not need food and can't digest it. Most people eat nothing at that point, and the most they want is something to keep their lips and mouth moist, painted on.
Perhaps you need to go back to your original ‘choice’ about the feeding tube. It’s hard to feel that you are making ‘life and death’ decisions for someone you love, but many of us are faced with it. A painless death with dignity is the best any of us can hope for. Love in a difficult time, Margaret.
I fear from all you say that you will question yourself if you withdraw these feedings. I certainly would not, but you seem to be. I will tell you that these feedings often lead to diarrhea and bedsores, just more torment.
If you are ready for your grandmother to pass, if you accept that she is at the end of her life, then I suggest you do as the doctor has advised. If you do not accept that she is at the end of her life, and feel that you are starving her to death, then I suggest you withhold a decision until you discuss further with her MD. Hospice is for those who accept that the end of life is essentially now here. That while some interventions may prolong (the often tormented) few days, weeks or months, these interventions will not stop death coming. Being born is a pre existing condition; we will have to die. If you have hospice your loved one will not suffer agitation, hunger, air hunger, but will be medicated for peace and an almost dream like sleepiness. Will this cause an earlier death? Perhaps by some minutes or hours or days. But not by much more.
https://www.choosingwisely.org/patient-resources/feeding-tubes-for-people-with-alzheimers/
And it seems that sensory deprivation is a strong factor in her life at this point.
When my father had one, for several months, we had to change our entire life to accommodate tube feedings every 4 hours, and up until about 1 am b/c Medicare didn't provide larger capacity bags for 24/7 applications. It was a very difficult challenge for both of us. And it was depressing except for the fact that Dad was rapidly improving physically, so there were strong motivations.
My father was 85 at the time, my sister had just died, so I could focus all my caring on Dad. He eventually was able to eat normally again, although he developed dysphagia in his later years.
I can't answer your specific questions, but I know that if I ever face that situation, I WILL NOT have a feeding tube. If there isn't a strong possibility that someone can recover, I think it just accentuates the misery of aging adaptations.
If your GM hasn't progressed, and is swallowing (and possibly aspirating) about 20% ) I think you probably are aware that that can lead to aspiration pneumonia, or more obviously, choking. That kind of choking and coughing and attempt to clear even pureed food from the throat is hard to watch, and probably harder for the individual.
You seem very compassionate, and you're aware that your GM doesn't have much quality of life now. I think that would be a major consideration in considering whether or not to prolong her life with a feeding tube.
A very blunt but realistic question is what does she have to look forward to?
I hope you spend some time in solace, considering all the options, and asking yourself if you would want to spend your last years in a similar condition, and that you make a decision with which you feel comfortable. I offer my best wishes for comfort and peace to your family during this challenging time.