Q: Dear Ms.Posvar, My sister has Alzheimer’s and she has trouble eating. The doctor says she is choking on her food and there is danger with feeding her by mouth. My sister’s children have decided to put a feeding tube for her. I am so sad to see her like this. Do you think this is the right choice? I know she would not want this tube. I am confused about it.
A: This is certainly a difficult choice for you and your sister’s children to make on behalf of your sister. Without knowing all the medical conditions, I am not able to tell you if it is right or not as this is purely a personal choice between the person with dementia and the family. What I am able to do is recommend safety and comfort regarding the tube feedings and without. The professional that is guiding you and family with these choices would also be able to give you pro’s and cons of your sister’s situation.
Making tough decisions like this can cause a lot of grief with family members. When the person is not able to communicate it is hard to decide if the person you love is refusing to eat or unable to eat because of fear or pain when swallowing or simply the body’s response to shutting down and preparing for exit (death). The last and end stages are so unpredictable with dementia. You can place a feeding tube and the person may pass shortly after or the person lives for a year or two. The fact is if you maintain comfort for the person, he or she will live their last days painless. It will not stop the dying process nor will it prolong it. We all leave this world at appointed times. Doctors and nurses are not gods. With all the hard work, education and good intentions we are still unable to save a person that is meant to pass. Likewise, you have heard of the person who for some unknown reason has survived the oddest circumstances. Doctors, nurses and families are blessed with caring for others and our loved ones and it is our nature to preserve life.
The feeding tube for your sister will provide some comfort from being at risk for choking. She will also receive more nutrition and possibly feel better even if all she does is sleep. If her body is not absorbing the nutrition she will eliminate it.
During palliative care if a person and family decide not to use a feeding tube there are ways to help the person maintain comfort in regard to feeding. If there is a doctor’s order to not feed anything by mouth then the orders are carried out However, there are orders to offer food which means you attempt to feed but if the person pushes, or turns away from the food, you are not to try again. Trying again would be considered aggressive. The thought is that the person may take the food with the second or third try, but they are doing it for you not themselves. Palliative care is also about dignity.
Regarding your sister not wanting the tube… I strongly recommend families meet together before there has to be a decision on tubes, and catheters and other health decisions. Your situation now is to support where you can. If it is something your sister strongly stated before she became dependant, I would recommend learning what her rights are in this condition and fight for her rights. Do consider your own health and what you can do and cannot do. It is always better to approach in love. You all care for the same person although you each have your own relationship with your sister so the perspectives will be different. Respecting and embracing each other’s differences at a time like this will be very healing.
This last to end stage of dementia is often quiet yet during care there is a lot of moaning going on. There is moaning even when there is no one touching them. It can be distressing to families as they continue to look for signs of discomfort and become grieved when they can’t help the moaning go away. But generally it is a quiet time.
Here are a few things that happen during this time:
• The person is still there
• Moments of connection take time
• They may have distress with unmet needs
• They can’t move by themselves
• Brain failure shuts down the body which diminishes needs to eat and drink
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around.
— Leo Buscaglia
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