An article in this weeks NY Times entitled Feeding Demented Patients with Dignity suggests that hand feeding dementia patients may be a better option than tube feeding them.
My God, are we really putting feeding tubes in the elderly demented? When did this happen?
During college, I worked as a nurses aide in a nursing home outside Philadelphia. For 20 hours a week (40 hours in the summer) for two years, I cared for patients in all stages of dementia, from the walking confused through to the end stage, stiffened victims confined to wheelchairs or beds. But in all that time, I never, ever saw anyone with a feeding tube.
As an aide, one of my main duties was feeding the patients. Whether it was solid food cut into small pieces,soft food mashed, or pureed food, we fed them. By hand. Three meals a day, seven days a week. What else did they have to do all day and what else was I there for, after all? Mealtimes were our touchstones, and we marked our days by them. It gave us all something to do.
I particularly recall one elderly woman I helped care for one summer almost every day for two weeks. She was at the worst, end stages of dementia. Stiffened with contractures and moaning constantly. When she wasn’t moaning, she spoke her catch phrases – they all seemed to have catch phrases – strings of words spoken over and over, almost like a mantra. Getting her up and dressed every day took two of us at least an hour. Changing her diaper, cleaning her, rubbing lotion into her skin to prevent dryness and breakdown, getting her into a chair, then changing the sheets, adjusting the lambswool mattress cover.
Then I fed her. It took a half hour or more.
I gave her tiny, tiny amounts of food on a spoon – for breakfast, hot cereal and a mashed soft boiled egg. For lunch and dinner, pureed meat , fruit or vegetables. Sometimes she ate eagerly. Sometimes I had to cajole her. Sometimes I got frustrated, or annoyed – I expect, at those times, she was as well. I remember that we were told to try to make sure they got protein in some form – soft boiled eggs were a god send in this regard, because almost every patient ate them well and eagerly. I tried to figure out what foods she liked and focused my efforts on those, but sometimes, she downright refused to eat or spit the food out. So we stopped – until the next meal.
And then, one morning, I came to work to find that she had passed. I have no idea what ultimately caused her death. But until the end, we fed her.
Are you telling me that today, this poor woman would have had a feeding tube because she couldn’t feed herself? And that it would take a social worker to intervene to suggest that perhaps someone might try feeding her by hand instead? Infants can’t feed themselves, but we don’t put feeding tubes in them, do we?
I ask you again – how in God’s name did we come to this?
I know the answer, of course, as do you. It’s because we have shifted the dollars in healthcare away from those who actually provide the care to those who make the diagnostic tests, the drugs and the devices.
And the feeding tubes.
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Thanks to Info Snacks, which is fast becoming one of my favorite feeds, for pointing me to the NY Times article.
COMMENTS
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- Facilities push them to reduce their exposure in the event of aspiration pneumonia, and reduce the number of CNA/caregiver hours required to feed people. Doctors offer them to make it look like they haven’t “given up” on the patient. Families choose them because they don’t want to “starve grandma to death”.. You’re totally right; it’s utterly horrifying, and there’s plenty of blame to go around.
I got an email from someone in my (former) caregiver support group wondering if I had any preference between NG and PEG tubes – in the setting of end-stage Parkinson’s with autonomic dysregulation!
Frankly, I’m a huge fan of tube feeding before it gets to the end-stage of life. My personal favorite method of tube feeding involves a straw with attached parasol, and my favorite formula is a mixture of molasses-derived ETOH, 40% w/v, coconut and pineapple, blended with ice. It helps treat my pesky symptoms such as “being outraged by the inability of others to appropriately care for terminal patients”.
E
- AUGUST 05, 2010
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Helen said…
- Thank you Eric for this comment .. and thank you Dr. P for this post. I cared for my mother during the last five years of her struggle with Alzheimer’s and Lewy Body diseases. Until the end, and for as long as she could swallow …. I fed her. It was spiritual, kind, humane and life-affirming.
- AUGUST 05, 2010
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Jayme said…
- I agree with you! I work as a COTA at a nursing home in Virginia. Tube feeding is also very disruptive to the patient that can remember that they should eat at certain times…but can’t remember that they already got all of their nurtients through a tube…
- AUGUST 05, 2010
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rlbates said…
- Eric, it’s good to “see” you.
Love the post, Dr. P and the above comments.
- AUGUST 06, 2010
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kathy a. said…
- wow. my mother had a stroke a couple of years ago. the cognitive damage was significant — she was not once oriented to time or place after that, had hallucinations, never remembered that she also broke a hip when she collapsed from the stroke, etc. — and there was no improvement after 2 months. it was very like the dementia her own mother had at the end of her life.
that was followed by medical complications: a GI problem they never quite figured out, and she stopped eating. she was a poor candidate for surgery. so i asked the specialist what would happen if she did not start eating again, thinking he would be factual and offer options like palliative care. instead, he snapped, “we’ll just have to put in a feeding tube,” and he bustled away.
really, i was shocked at his response. we were not going to do a feeding tube. i got things straight with her primary, and we got hospice involved right after that. but i really had to advocate for palliative care — i had to know it existed, had to understand that a feeding tube would prolong her suffering, had to flex my power of attorney for medical care.
- AUGUST 06, 2010
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- Thanks for the shout out to Info-Snacks!
Joshua
www.jschwimmer.net
- AUGUST 06, 2010
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Anonymous said…
- Of course, it’s worth pointing out that tube feeding does not, in fact, prevent aspiration. It does cause increased need for restraints to prevent the removal of the tube. Which just makes the whole thing even more inhumane. I know a gerontologist who feels so strongly about this that he will sign off the case if a family insists on a feeding tube.
- AUGUST 06, 2010
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grapheme said…
- This post brought tears to my eyes. Tragic situation in an increasingly difficult world. It has made me think about what I would do in a similar situation.
- AUGUST 07, 2010
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Daniel F. Kane said…
- As the demographics shift from boomer to X/millennial, and the numbers drop to both finance (social security/medicare) and provide care (hand feeding) one can expect more tubes as the same aide in 20 years can hang probably 10 feeding bags per hour but hand feed only two.
Our success at increasing life span (which is a good)co-incident with our success at decreasing birthrate (which is a societal experiment on a scale not seen before in human history) is the root of this issue. Simply stated, if your children can not or will not hand feed you in the winter of your life, in 20 years or so, there will not be anyone to feed you.
A person in a chronic disease state who has the ability to swallow should have the dignity of being fed in a manner that allows them to swallow and live their life to the extent they are capable.
The up an coming demographic, created by us, will likely make this impossible.
- AUGUST 07, 2010
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Anonymous said…
- Good lord, this is outrageous. I’ve never held any clinical position but I’ve hand-fed patients with dementia both as a volunteer and as a ward clerk, back in the 70s. Some of them didn’t really need hand-feeding, just someone to open the cello-wrapped utensils, cut up their food, get them started, encourage them to keep going, and sit with them while they ate. Poor old Violet, it was the only time she wasn’t stressed out over her clothes having been stolen because she thought she was in a pre-War rooming house.
- AUGUST 07, 2010
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VM Sehy Photography said…
- I’m suprised that they don’t have those tubes hooked up to a computer to save time and effort. It’s a sad planet that we live on when people can’t take the time to give things a personal touch. Also, once everthing becomes about money, the soul is sucked out of living. I think I’d rather volunteer for euthanasia then get fed by a tube. I’d be afraid to mention using a tube to feed babies for fear that someone out there will think it’s a good idea.
- AUGUST 07, 2010
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kathy a. said…
- i should clarify that my mom was offered hand-fed food, and sometimes even in the last part she did eat a little. the thought of a feeding tube to force nutrition, though, was awful. she tried to tear out every tube they put in her. we just were not going there.
- AUGUST 07, 2010
Am I correct in assuming that the hand-feeding time would pretty much be the most human contact one of these patients would have all day? I am in the extremely privileged position of not having had to care for a loved one in this position, but I can’t help feeling bothered that they are losing a huge chunk of their human contact as a result of tube feeding.
We actually do use feeding tubes in a small subset of babies who can’t manage to nurse at the breast or suck-swallow from a bottle effectively. In nearly all cases, the goal is to transition them to normal feeding. It is not considered a time-saving method of feeding, however. Babies (and frail adults) need human contact and conversation.
Adults also benefit from the additional stimulation of different tastes and textures in their food.
Patients, especially dementia patients, deserve all the respect and dignity they can get. Yes, feeding dementia patients can be slow and cumbersome, but people, no matter what their age and mental state, deserve compassion and humanity–especially the elderly. Patients with dementia already feel confused or uncomfortable, and being fed by a machine likely doesn’t help. Health care should be more about compassion, care, and human interaction than machines and the people who make them.
Being the health professional (speech therapy) that usually downgrades diets, this is a disturbing post.
However, just to give your readers hope, last week I saw a 65ish mentally impaired gentleman that lives in a group home, has become angry/aggressive during meal times (thus has been choking – hence the swallowing eval to ensure it wasn’t something else) and is obsessed with Harrison Ford movies. His swallow was fine (but he was alone with me and a nurse, not eating around his normal group of friends/roommates). I recommended that they simply try different feeding tactics at meals (eating at his own table, keeping the other guys that bother him away from him at meals, cutting up his food into smaller chunks, giving him a small glass of liquid and simply refilling it more often) all of which the caregiver was happy to do/implement.
After trying and failing to stress the importance of these strategies to the patient, I simply told him from now on he had to “eat like Harrison Ford” in lieu of shoving food in his mouth or chugging milk at lunch. A “What Would Indiana Jones Do? ” approach to mealtime if you will. A “You can’t hunt for Red October with milk squirting out of your nose while you’re choking on your peanut butter crackers” explanation. Suddenly it all made sense to the patient and the nurse left with a workable, repeatable strategy moving forward that she could easily explain to her co-workers.
A tube wasn’t mentioned or even considered.
My mother suffered from Parkinson’s Disease with dementia and spent her final months (after she broke her hip and developed a contracture) in a care facility. Mind you, this was not a nursing home. It was a private-pay, commercially run facility that was actually very good. Let me tell you, no one spends the time with patients that you’re talking about having spent when you were in college. On my mother’s special care ward, where all the patients had some degree of dementia and many had physical disabilities as well, there were three aides on the day shift and two on the evening and night shifts. To handle about 20 patients.
The aides were caring and committed. They spent every minute working with some patient; in all the hours I spent there, I never saw them sit down and kick back or stand around gossiping. But they simply did not have time to feed and dress patients. Our family hired a private-duty aide to stay with Mom from 8:00 till 6:00, which pretty much covered her waking hours. The aide fed Mom unless one of us was there at mealtime, in which case we fed her.
One of the reasons we refused to put Mom in a hospice was that we visited a number of them and we noticed there were never any patients enjoying the comfy parlors, the common room with the big-screen TV or the beautiful gardens. When we asked why not, every facility told us that patients were welcome to use these areas if they could get up, dress themselves, and get to the parlor, the TV room or the garden under their own steam. If they couldn’t, the facility took it as a sign that the patient was too far along in their “process” to get out of bed. Although there might be twice as many aides in the hospice as there were in Mom’s care home, those aides DID spend all their time sitting on their butts.
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I guess you haven’t seen the worst. Some advanced dementia patients LITERALLY CAN’T SWALLOW the foods. In these cases, definitely not a choice to hand feed them or not.
We feed infants who can’t feed themselves because they can swallow. It is different.
I have seen many advanced dementia patients couldn’t close/open their mouths, with salivas all over. It’s obviously we couldn’t feed them by hand, hence some family members opted for tube feedings.
Being said that, I’m not supportive of tube feeding as well because I think it is cruel. When the dementia patients can’t swallow (note: different from can’t feed themselves), we should let them go in comfort, but not force feeding them.