The Decline of Tube Feeding for Dementia Patients

Aug 30, 2016 · 168 comments
Hans Eckardt (Orange County, CA)
Perhaps now, at last, people will begin having conversations about end of life treatment. So much of what passes for "care" is ultimately cruel and unhelpful to everyone involved.

When my mother was close to the end of her life, an heroic doctor suggested hospice care. That resulted in the richest six months that we had ever spent together! Death and dying are frightful subjects, but for my family, everything changed for the better when we started discussing it from the heart, rather than from the clinical perspective of machines and tubes.

Yes, there is an ethical and spiritual discussion to be had about the potential for hastening death, but there is an equally urgent conversation to be had about the ethics and cruelty of preserving life at all costs.
Ginny (Pittsburgh)
A reason to try to avoid Catholic hospitals! When I was making my living will with my physician, I asked for no life-prolonging interventions -- just comfort care. He said there might be a problem with refusing tube feeding if I wound up in the Catholic hospital which is part of my network. Glad I am beyond child-bearing age, because that is of course a good reason for a woman to avoid these hospitals as well. (See recent damage to women's healthcare caused by refusal of a Catholic Hospital to treat an emergency involving a bleeding IUD). Catholic hospitals are the only available treatment sources in many communities, so best be aware that your choices may be impacted by the theological interpretations made by the Catholic Church.
LisaS (Bronxville, NY)
My family is caring for my 104 year-old grandmother who first showing signed of dementia about 12 years ago. She hasn't recognized myself or my sister for at least 8 years. Slowly I watched as her memories slipped away. At one point, she was speaking more Swedish (her native language) than English. Now, at 104, she is unable to do anything for herself. Her daily activities involve drinking breakfast, sitting in the kitchen with the radio on, enjoying a nap, and finally drinking dinner. Solid food was eliminated from her diet about a year ago--she would take the food but it would never be swallowed. We are fortunate enough to have an aide and family who sit with her all day making sure she has the fluids and nutrition to keep her comfortable. This has been a very long, drawn-out process. And when people tell me how lucky I am to still have my grandmother with us, I have to remind them that we only have a shell. She is no longer there. Although I am not the family member who makes these decisions, I would hope that a feeding tube is never even a discussion. Prolonging her existence is not the same as prolonging her life. And I am sure that if she were given a choice, she would not wish to live this way.
Reed (Indianapolis)
You know, people who are unfamiliar with the natural course of death have this innate idea and response to declining health that "if a procedure is done to keep him/her alive a little bit longer, then he/she might bounce back to "normal" and live a bit longer."

Coming from a lineage of doctors and being old enough to experience the course of death of 2/4 grandparents, I am strong advocate of quality of quantity.

Both my grandparents passed peacefully and comfortably. They both had DNR's and we did what we could to make sure that at no point were they in pain mentally or physically.

This is the mindset that common people need to have towards geriatric healthcare. Sure, no one wants to see their loved ones pass, but it's selfish to see them longer, knowing that they are living past their expiration date.
DEWC (New Castle, Virginia)
But with some people "old" at 74, and others at 104, it's hard to make the call that there's no genuine prospect for a "bounce back".
Merley (Iowa)
My father-in-law is near the end of the Alzheimer's stages and is eating little and refusing even his favorite foods. His nursing staff, altogether caring, comments daily on his intake-- deeming some days good in terms of calories and other days not so good because all he's had is toast and a few bites of ice cream. Reading "Being Mortal" by Atul Gawande, I have a new way of evaluating a good or bad day and it has nothing to do with food intake, and everything to do with his pain level, anxiety, comfort or lack thereof, and the love he still recognizes from his family as we visit daily. Alzheimer's disease is a thief, and inserting a feeding tube only aids and abets its plunder.
Nancy R (USA)
We need to offer people diagnosed with early dementia the option of aid in dying when the appropriate time comes. No one should be forced, against their will, to endure years of decline that only ends in death.
Den (Ohio)
Having gone through this with my father who did not recognize any of us, including his childhood playmate and wife of sixty years one has to understand that life includes death. Everyone dies. The process is natural and can be fairly easy if everyone in the family can agree to allow for a comfortable respectable death. There's the rub.
Edie clark (Austin, Texas)
"higher Medicare reimbursement for tube-fed patients ". "for-profit nursing homes use them more than non-profits".
I am convinced that profit was the only reason the for-profit nursing home convinced my family that a feeding tube would benefit my mother, who had Parkinson's Disease and dementia. As her condition worsened, she often no longer recognized us, was incapable of speech or movement. The fact that she had a feeding tube meant my father had to make the agonizing decision to stop the feedings. Although the nursing home initially agreed, they then decided that she would have to undergo spoon feeding, which since she couldn't swallow, meant choking. We discovered that despite a doctor's orders. they were continuing the tube feedings at night. Why? Perhaps to make sure they continued to collect thousands of dollars a month for a patient who couldn't complain?
mike warwick (shawnee, ok)
As my 86 year old father was dying of dementia we had a feeding tube implanted, mostly at my mother's insistence. The surgeon, who was an acquaintance, suggested to me that it was not a good idea. It did nothing for his quality of life or the quality of my mother's life. She continued her daily vigil at the nursing home sitting by the bed of a man who didn't know who he was or who we were. We discontinued the feeding 6 months later. Letting my father go peacefully was the best decision we made in the last year of his life.
JaneQPublic (Brooklyn)
My 85-year-old mother, who has moderate dementia, recently broke her hip and, after surgery, went to a rehab center. Her appetite was never large, and of course it was worse under the circumstances. But on the very day that a rehab dietitian suggested a feeding tube, a family member, with a combination of patient hand-feeding and encouragement, successfully got her to eat a full meal, and half a dozen cookies to boot. While I'm sure there are instances where a feeding tube might be appropriate, it is absolutely not appropriate for my mother, who is still quite capable of chewing and swallowing and enjoying her food. I'm convinced that the feeding-tube suggestion is all too often born not of medical necessity, but of laziness.
kate (Brooklyn)
Feeding tubes make life easier for the staff (and sometimes the family), not the patient.
Winston (Los Angeles, CA)
"Mrs. Jewell began refusing food altogether and soon slipped into a coma." The penultimate sentence of this informative article gives the same sort of unrealistic hope that feeding tubes often do. Those caregivers and family members who've decided against feeding tubes for their loved ones must be prepared for a sometimes long, uneven course of decline. It's surprising - and tragic, how long patients sometimes "hang on" after the "no feeding tube" decision has been made.
carol goldstein (new york)
With my mother it was several weeks of small ups and downs until she died. But in the nursing wing of her excellent CCRC with hospice participating she was kept relatively comfortable on inhaled morphine and other, nondrug care. Being retired, I was able to be there about 12 hours a day so . I believe that she was relatively comfortable because there was a day some yo-yo decided to take literally the "on patient's demand" orders about the morphine and she became visibly restless and uncomfortable until a correction was made and the every four hour routine restored. [As I have written elsewhere, I had repeated instructions from her over the years about what she would and would not want done.]
Janet (New England)
We shouldn't have to settle for "relatively comfortable" when we're in the final stages of dying. It simply no longer matters at that point how much morphine it takes to vanquish pain, even if it means the patient sleeps away the rest of his life.
Gerry (WY)
AND or "allow natural death" is an end of life health care directive that is being discussed.
One of the hardest parts of being a long term care nurse is hearing a resident with multiple chronic health issues state they are tired of this life, they've made their peace and just want to "go home" and family members balk at a DNR or AND.
Please talk about your final wishes before a family member makes them for you.
M.Lou Simpson (Delaware)
From experience with a much younger family member who was rapidly losing weight due to prior stomach surgery, his surgeon opted to insert a feeding tube. It was so painful, the patient couldn't bear it for long; he figured out how to burst that little "bubble" that kept the feeding tube from slipping out, and removed it himself. Imagine how cruel and torturous it must be for those suffering from Dementia or Alzheimer's disease who can't even comprehend what's happening to them, or why.
Cate (France)
My father had a feeding tube, but he didn't have dementia. In fact, despite not being able to swallow, and so not being able to indulge in the great pleasure of his life--eating--he was keenly intent on staying alive as long as possible. You could say he didn't have quality of life, being stuck in a bed, barely able to move, but he loved his nurses and enjoyed telling them jokes and stories--they would hang out in his room--and above all he loved visits from family. Dying was a long process, about six months. He was a big, strong guy. He was 85 when he died. I wouldn't have begrudged him a day less.
Susan (NY)
I'm sorry, Cate, for your loss. I think your comment makes an important distinction--your dad chose this intervention for himself. It's crucial for people to speak with their loved ones prior to their loss of capacity so we as Health Care Proxies or surrogates can make informed decisions on behalf of those who entrust us to their care.
SES (Washington DC)
My Mother lives at home with us. She recently celebrated her 99th birthday. She still can say a few words. She recognizes us, she tries to communicate and when I asked her what she wanted for a "Cake" She let me know through "yes" and "no" what she desired. For a cake we made a drink of chocolate Ensure, chocolate ice cream and Amaretto. She loved it. Her face was radiant with pleasure and delight!

When she was younger and able to make decisions, she refused all tubes and decided on a DNR.

For her last meal, which will eventually arrive, we will give her her favorite Chocolate Amaretto liquid "cake." Until then we try to make her life comfortable and entertaining as she goes towards her goal of becoming 100 years old. Bon Appetite, Mama.
Larry Lundgren (Sweden)
NYT Medicine and NYT comments at their best. Anyone my age (84) should make this article and top/all comments part of a my wishes package for those who may have to take responibility. Note: Printed documents, not NYT URL. I shall do so.
Dual citizen US SE
Cheryl (Yorktown)
Great idea, I'll add this article to my advance Dir/ HC Proxy.
Ash Ranpura (New Haven, CT)
The racial difference between tube feeding rates is striking, but it's facile to speculate that the difference is due to doctors not spending enough time with nonwhite families.

As a doctor myself, my impression has been that African American and Latino families are more likely than other racial groups to request aggressive medical intervention. Sometimes these families have strong religious views which guide their choices. At other times I have wondered if there is a mistrust of the medical establishment, itself notably deficient in African American and Latino practitioners.

In any case, there is an interesting and important reason why feeding tube rates vary so strongly by race. It's worth thinking about more.
Larry Lundgren (Sweden)
@ Ash Ranpura - New Haven - Ash Ranpura, the differences you refer to are almost certainly cultural. African American and Latino are both best described as ethnicities for a variety of reasons.

You could easily have written there are significant differents between groups depending on the particular cultural practices of each group.

As a citizen of both the US and Sweden I am all too aware of US use of archaic categories and made more aware because advanced Swedish researchers like Svante Pääbo find USCB categories highly unsatisfactory.

You might find this of interest:
and if you do you might then want to read this:Taking race out of human geneticsScience 05 Feb 2016:
Vol. 351, Issue 6273, pp. 564-565
RB (Midwest)
You are exactly right and as a Palliative Care physician, I resent the implication that the physician is responsible for this statistical difference.
In the aftermath of Tuskeegee and the use of Henrietta Lacks' cells without her family's permission, (to name two), African Americans have reason to distrust the traditional medical establishment. White Americans can assume they'll get the best treatment; African-Americans and Latinos cannot.

I (white) do not want any aggressive medical intervention whatsoever, especially as I get older. But I can see why someone who thinks they are not going to get a fair shake because of their skin color might.
Mark Morss (Columbus Ohio)
Doctors know there is a point at which feeding tubes do not extend life. They will tell you, a feeding tube will increase your feeling of wellness. A wise man with a terminal illness responded to the doctor who made this point by saying, "No, it will make you feel better." He did not have a feeding tube, and he died on his own terms. He was a courageous man who did the right thing.
Phyllis (Walnut Creek CA)
I am so glad I moved back to california where I can now determine how long I want to prolong my life if I have a terminal illness.
Michael (New York, NY)
My mother passed away 2 months ago at age 63 from Parkinson's and Parkinson's dementia. She had begun having unexplained seizures, which her neurologist described as nerve damage. Shocking the entire family, he recommended hospice care and said she was near the end. While she had suffered for many years and it was painful to see her endure such a cruel disease, we felt unprepared. But I am so grateful that inpatient hospice was recommended over normal inpatient care, where they likely would have recommended a feeding tube, or other invasive tests and procedures to try to "fix it." There was no fixing needed, what she and the family needed was a peaceful setting for her to rest, be cared for, relieved of pain, and for the family to gather. While for some this place is the home, my father was too traumatized to not have trained staff a few steps away, he needed to be "off-duty" so he could just be with her. The palliative inpatient hospice was perfect. The only problem was that the family had to fight to not have her discharged, since it seemed that some members of the staff felt they were only performing "custodial" care that could be handled elsewhere. They were uncomfortable with the open-ended prognosis. It wasn't until the aspirating and eventual inability to eat at all that it was clear she was near enough to be allowed to stay. At this, the family quickly gathered together for one last night, and she passed away a few ticks before midnight - 2 wks after being admitted.
Patnb (USA)
Dementia care and end of life decisions are highly personal and should be rooted in the individual's and the family's values, beliefs and wishes. Often, professionals and institutions treat death as a routine algorithm that they've seen a hundred times before..becasue they have. But it is not a repeated routine for the family, it is a once in a lifetime experience for the individual and a meaningful, profound experience for the family. Families need to go through this passage in life fully present, and their views and feelings need to be deeply, genuinely respected. Individuals and families should make the decisions that feel right for their unique family. Often, doctors and nurses are close by, pressuring families, rushing them, impatient, frustrated with the families' "denial" or "lack of understanding", or "lack of education"... they want you to do it the "right way", the "best way" ...their way. Often an efficient way. These professionals should gently offer some information and step back. They should resist the desire to push their view point or represent their own interests...Professionals should have the strength of character to allow families to walk through end of life experience in a way that reflect the family's love and respects the family's emotional needs. Families should have power to chose and live their personal path without being pressured to follow the values and beliefs of the nurse, doctor or other employee.
Cate (midwest)
Sorry, that sounds beautiful and all, but when a family is eager for a 85 yo bedridden dementia patient to receive full code, feeding tube, etc., it's time for a "no, sorry." There's the beautiful, wishful way of thinking you are advocating, and there is respect for dignity of death. I hope all medical professionals come down hard on the side of a peaceful, painless, dignified death for their patients, that respects their life and their right to die, which happens to all of us.
BigGuy (Forest Hills)
Putting in a feeding tube is far more profitable than hand feeding a patient. The surgeion will get at least a $1000 and the hospital at least $5000. Plenty of hospitals can end up charging over $15,000 for what is for them a very routine opeation that costs them much, much less than that to do. In contrast, it will take a month or more to generate $6000 from a health aide hand feeding patients.

The aide will be one on one for 20 minutes for each meal with 8 patients or so. The aide will get paid about $8 an hour for those 8 hours with no benefits at all and will be billed out at 25+ plus an hour.

Keep in mind that the primary job of the intake social workers at nursing homes and hospitals serving the elderly is NOT to help the patient or the patient's relatives. The social worker's primary job is to make sure the facility is fully paid for the care to be given, whether that payment is received from medicaid, medicare, health insurance, a state trust fund, or the savings of the patient, or the patient's family.
Lisa (NYC)
I'm glad that more Americans are coming to their senses and no longer trying to avoid death at any and all costs, or trying to prolong life to extreme levels, while sacrificing Quality of Life. I know that should I ever get to the point where I am essentially a 'vegetable', being fed and cleaned and not being able to communicate...where I am essentially an emotionless empty robot, that is the time I want my family to do whatever it takes, break any laws they must, to send me off. It is an utter waste of emotional energy to sit and watch such a person endure on the planet, it is pointless, and it is such a waste of money. I'd much rather that money be used, no to prolong my life, but on my family who remains in this world, and on those charities I value.

I get so angry at our government and religion, for trying to control our lives and our bodies. Who is anyone to tell us what we can and cannot do to our own bodies? If I choose to die by lethal injection versus after years of being a vegetable with a feeding tube, that should be my free choice to make clear to my family, well beforehand.
Lisa Wesel (Maine)
I'm wondering about the discrepancy between non-profit and for-profit nursing homes. Is there a reason for that? Is there a financial incentive to insert a feeding tube that would cause the for-profit homes to do it much more often? Or do they not have the staff to hand-feed their residents? That would explain why bigger homes use them, too.
Phyllis (<br/>)
Yes to both.
MJC (California)
I see so many comments about the horrors of feeding tubes. I am on the other side. I watched my mother, father and grandmother starve to death. For each of them it took long painful months. At first my father's hospice nurse and doctor kept saying "his organs are shutting down it wont be long"". It took 3 months during which time the nurse switched to "I don't know why it's taking so long". My father died a skin-covered skeleton, as did my mother and grandmother. It was horrifying.

I am grateful to the death with dignity law CA now has. If I acquire a terminal disease I'm going out before I am dependent on a doctor or relative to decide whether I'm alive enough to deserve nutrition.

I think African-American families may choose feeding tubes because they want as peaceful and painless an end as they can give their family member. And they trust their own compassion more than a doctor who barely knows the dying person.

I read the PDF. It states that a feeding tube is a therapy that can be removed when it is no longer helping the patient.
s einstein (Jerusalem)
After reading this article again that it would be helpful, given the importance and sensitivities of what is being raised and described that we also consider additional perspectives . Tube feeding relates to WHAT is being chosen, or not chosen, to be done, to or for another fellow human being forced feeding or someone who has the power to do so. This choice raises the complex question about A WHO; the selected, non-deciding target. A consensualized medical disorder (?Alzheimers?); a PERSON, conscious or not, still alive-definable in various ways by people who do not eat through tubes- but who is able or unable to make a necessary decision given who s/he currently is, no longer is, never would BE; a bio-chemical, interacting system (mis)functioning at various levels and/or qualities. The oft noted addendum of what the treating physician would do for his/her own parent, spouse, child, sibling, is not necessarily relevant helpfully or even relevant when a painful-decision is made for another given all of the uncertainties, unpredictabilities, and unknowns which entail an end of life process. I should have, I could have are but berating words when the last breath of another exits. Hopefully when one is in a situation to make a "tube-feeding," or another life saving decision WE have some idea about what that still-alive human being would have wanted. Perhaps we should begin to ask those people with whom we are close?
TC (Washington, DC)
This is a hard decision to take as a caregiver--no matter what the recommendations or evidence shows. Emotion is a huge factor. We made this decision on my mother's behalf. While I don't think we seriously considered a feeding tube, there are times when the emotions leave you tempted to grasp that option. As some might feel, "How can you let the person starve..?" There are a lot of nuances at play and doctor recommendations are only one factor.
Nancy (Turner)
In meeting with patients with late stage dementia and their family members as a hospice nurse, I provided gentle education, that over time, the person will sleep more and eat less. This is the way dementia becomes physical, and there may be changes in swallow. The person is not typically refusing food. Their body is slowly shutting down.
Paul (Ithaca)
Alzheimer's killed my Mother after 6 years. Though she never had a feeding tube, she had all kinds of interventions, including coaxed and assisted feeding and drinking. All for a life that would have horrified that once proud, independent and exacting person, had she been aware. My ailing cat had a more humane end than did my Mother. If I cannot be euthanized, as was my cat, at least allow me to dehydrate and starve, should I no longer request drink and food, or notice its absence.
CityTrucker (San Francisco)
I have been a physician for four decades and worked in Nursing before that. I have never known a single MD who wanted a feeding tube or CPR when they were facing insentient disability. It astonishes me that so many providers routinely proceed with inhumane treatments that they would reject for themselves and their own families.
jazz one (wisconsin)
I don't doubt your experience, sir/madam.
A recent WashPo article/study showed just the opposite, however ... that doctors are all-too-human, and fight for life, even if very little, or nothing, to be gained by extended intervention(s).
I'm with you, though, and truly hope to have the strength, the ability and the documents to ease me out early rather than 'overstay' my reason to be.
jb (ok)
I don't know the study you refer to, Jazz one. But will cite this one: " Our data show that doctors they have a striking personal preference to forego high-intensity care for themselves at the end-of-life and prefer to die gently and naturally. This study raises questions about why doctors provide care, to their patients, which is very different from what they choose for themselves and also what seriously ill patients want."

Most studies online say the same. Check it out.
KittyKitty7555 (New Jersey)
My father had a devasting heart attack at 78. He was dead for at least 5 minutes, but was unfortunately revived. Of course his bran was damaged profoundly and irreversibly.

During his long stay in the hospital, his doctors pushed had for a feeding tube. But we were able to prevail on my mother to refuse permission for this because even 5 years ago the medical literature was clear: feeding tubes for elderly patients suffering from dementia do no good.

When he was released from the hospital after his ordeal my father quickly regained all the weight he had lost. He subsequently suffered other serious health problems, and spent 3 more miserable years costing American taxpayers more money than he ever earned during all the years he worked. Not just more than he had paid in taxes.
Patnb (USA)
I'm sorry for the loss of your father. I'm not worried at all about the money we spent to care for him. When you think of your dad, don't worry about the taxpayers.
d. lawton (Florida)
So, a human being ceases to be a human being if they "cost the tax payers money"??? Are you against kidney dialysis? What about keeping Downs syndrome patients alive? Are you against capital punishment, btw?
ED (Wausau, WI)
Tube feeding a demented patient is akin to torture and should be illegal. It is most definitely against medical ethics and simply serves to prolong suffering. The general public should be educated to the fact that a beating heart does not a life make. We routinely take our beloved pets to be put to sleep to end their suffering, its ironic that you can't do the same for your own flesh and blood, in fact its almost goulish.
Patnb (USA)
You're very sure "what a life makes". Some believe that when certain abilities are lost, or perhaps eve never possessed, the life has no meaningful value. Consider that all people have the right to ask themselves these questions, and find the answers for THEM SELF.
Anthony Reynolds (New York)
Feeding tubes at end of life serve nothing but the medical industry. Let people die naturally.
nowadays (New England)
Luckily I understood this when the hospital suggested a feeding tube for my father who had Parkinson's and dementia and had just had surgery to repair a broken hip. And luckily the hospital had a palliative care team. And luckily, my dad had written out his wishes. And luckily all family members were in agreement. But to actually decline a feeding tube, knowing your Dad is dying is a terribly sad experience. We transferred him to an excellent in patient hospice facility. Once there he actually enjoyed a few bites before stopping eating entirely.
Qwerty (NoVA)
Yes, I had an identical experiences with my father with advanced PD (minus the hip surgery). If he and my mom hadn't been extremely clear with each other and us about his wishes at end of life, it would have been nearly impossible to refuse the feeding tube. No one at the hospital was prepared to suggest anything else. We made the right decision, but it was wrenching all the same.
s einstein (Jerusalem)
A complex, upsetting, human-medical-delivery of care, issue/problem, is presented in a way that unites a binary response; to agree or not. When is tube feeding indicated or not? When is it harmful or even, perhaps, irrelevant? Based upon what; "facts," beliefs? Who makes the decision(s) and when?
Those educated/trained, experienced and knowledgable about disease or those in the less than measurable area of quality of life, well being, etc? We have, as a generality, increased knowing - but not necessarily understanding- as well as technology. And in the process, with people living longer on average, we have constructed and documented more disorders, pathologies and diseases while inadvertently " dehumaninizung" more people who become targeted foci for medical and othe planned interventions. There are more courses about medical ethics and more committees. A scientific secular deism has reufied "evidence-informed," overlooking that generalizable evidence is not garbed in making the correct, necessary decision, and does not protect any of us from ever present uncertainties and unpredictabilities of either processes or outcome. We are challenged, as flawed humans, with perceiving, judging, doing (or not doing) the best that we can and hopefully learning from...Evidence does not in and of itself make living and adapting to daily life easier.
jb (ok)
We need to be able to make our own decisions and let people know in advance, and those decisions should be respected. Medical helpers should understand that it isn't about them; I don't mean that as a put down, but there's a time to step back in respect of our human being.
George Costa (New York)
My father faced a similar issue. After living in an long term care facility for ten years - in part to care but also to the dedication of my mother, who visited every single day - he essentially stopped eating.
When we met with the care facility they presented their case and then allowed us time to discuss, amongst ourselves.
My sister and I disagreed with the feeding tube, but we kept that to ourselves. Fundamentally, we felt that having been married for 55 years, her wishes should be respected?
She felt that the feeding tube was inhumane.
Anne (Alaska)
One night, I had an elderly dementia patient assigned to me (a nurse). She was ill with heart failure and was on strict liquid restrictions, and due to swallowing problems, the limited fluids she was allowed were 'nectar thick,' i.e. disgusting syrup-like consistency. Her family had just made her "comfort care," so we were no longer insisting on various medical interventions. In a rare lucid moment, she asked her (adult) granddaughter for some ice cream. I found some in the floor's freezer, and her granddaughter lovingly fed her. She appeared to aspirate some of it, but her eyes shined as she tasted it. She passed away that night. Sure, if she hadn't been fed ice cream, she may have lived a few more days. But what could be more lovely than being fed ice cream by a beloved grandchild as your final meal?
MJC (California)
Christina ONeill (Massachusetts)
I speak from experience (a family member, not me). Patients who are cognitively impaired due to any number of illnesses, and are given a nasogastric tube, may rip it out because of the discomfort, and they are not aware of what they are doing. If the facility they're in does not have the capability to reinsert the NG tube, that patient has to be transported to a hospital to get it reinserted. A gastric tube is less likely to be dislodged. However, another problem arises -- at least it did in our case. The ''nutrition' mixture administered may have a high proportion of fructose or other sugars, which in our case led to a diabetic condition for the patient. Once the tube was removed and the patient was able to eat normal food, the diabetic condition disappeared. Don't know how common our situation was, but I'd urge anyone considering a feeding tube of ANY kind for a loved one to ask what kind of mixture is being 'fed' to the patient. It could cause as many problems as it purports to solve -- only different ones.
George (what do you mean)
It's shocking that doctors propose tube feeding to prolong the life of people with dementia. It would be interesting to hear doctors discuss this. Also, to know if they would propose it for their parents, or for themselves.
Andrea Burdick (Portland)
No, they probably wouldn't. But they also probably wouldn't be concerned about being sued by their own parents for lack of care. Sadly, that is the situation here. The medical profession orders every single test and recommends every single procedure that might possibly prolong life out of an overriding concern that not acting, not doing, may result in a law suit.
NKTA (Behind the Orange Curtain)
Why is it shocking to you that doctors propose the tube feeding ? We, as physicians, are obligated to provide all options to patients and families and we, as physicians, are not given the ability to make the decision for patients ourselves. As a physician who has to place these feeding tubes, I am not allowed to make the decision for the family and patient. I am only allowed to provide options and am obligated to fulfill their decisions. There has been too many times that I have to place these tubes and personally do not see the benefit to the patients' quality of life. However, each time the option to let patients die "naturally" and stop feeding, families have tremendous difficulty accepting the option to stop feeding. I am surprised of the statistics presented in this article since this is not what I observe in my practice. I wholeheartedly agree that we all should think about "quality" of life and not how long we last since losing the ability to eat is one of the most dehumanizing experience any patient has to face. I hope this article will be read by many and eventually this country will not continue to provide futile care to so many. I look forward to the days when "end-of-life" or discussions regarding advance directives are part of a routine medical visit so that the people have the ability to express their preference of "end-of-life" care and not have to rely on their families to make these heart wrenching decisions for them when they are incapacitated.
Rebecca Rabinowitz (.)
I oversaw the end of life care for a woman who suffered from advanced fronto-temporal dementia with Lewy Bodies - she developed dysphagia over time, and unsurprisingly also tended to pocket food, or simply forget that it was there. Eventually we pureed every single thing she consumed, and added Thicket to her beverages, as a passive swallowing assist. Under no circumstances would her family or I have permitted a feeding tube - aside from anything else, there is just as great a risk of developing aspiration pneumonia from the feeding tubes as there is from having a tiny fragment of food wind up in the lungs - something the physicians rarely mention to families. Additionally, most patients have great difficulty tolerating the various nutritional formulas, and often wind up with persistent diarrhea, which is painful and avoidable. An agitated dementia patient can, as others have noted, too easily pull out a tube, with potential infections and other adverse consequences. We did very right by this woman: who, despite her advanced condition, was clearly capable of summoning from deep within her soul, the capacity to decide that she had had enough - she clamped her teeth shut when the caregivers tried to feed her, and, after speaking gently with her, I told them to stop the hand feedings unless she opened her mouth again. She did not - and with medication, she had as peaceful a passing as anyone might have wished. More physician honesty would be welcome about tube feeding.
My father had a feeding tube put inside him when early onset Alzheimer stuck him at age 62 and he would no longer eat. It was the biggest mistake my family made. My dad lived as a complete vegetable for 10 long years. After one year of the disease he no longer knew my sister, my mother or I. He could not walk, talk, or communicate. There was absolutely no quality of life because there was no life. The lesson we learned was just because we can now keep people alive doesn’t mean that we should. The day he died was one of relief for my entire family.
Jo (Chicago)
Dr. Atul Gawande's, Being Mortal, was a guiding light for me in caring for my mother in the last months of her life. She had Lewy Body Dementia. The nursing home was close to my home, so I was able to be there for mealtime. About 7 weeks before she died, she stopped eating. She refused to take in any food, she may not have known what to do with it. I knew three years prior, while my mom was still herself though already showing signs of LBD, difficult that it was, I knew I had to have "the conversation" with her, what would she want at the end of her life. She let me know clearly, and I shared with my three out-of-state siblings, what her wishes were. She did not want a feeding tube or to be resuscitated. Those last seven weeks, I and my brother, who came for a week, fed her milkshakes and ice cream. Just a few days before she passed, she ate chocolate Haagen Dazs and exclaimed, "Delicious!" That was her last meal. We must respect when the body is shutting down. And we must allow the people we love to continue their journey, even though it be without us.
oldnurse (usa)
it is common sense medicine and may it herald a revolution in end of life care.
Perry Brown (SLC)
We recently lost my mother to advanced Alzheimer's. Before her final decline, my siblings and I met with my mother's caregivers and they explained that at some point she would no longer be able to swallow on her own and that she would likely die shortly thereafter when that happened. We decided at that point that we would not offer any artificial nutrition or hydration when the end time came. Feeding tubes are supposedly painful and they are cruel. While I am sad that my siblings and I had to watch our mother die, I am glad that we made the decisions that we made when we made them.
Concerned (Ga)
Thank you for this article
Katie (<br/>)
In 2004 my mother was in the last stages of her life in a nursing home. She was unable to hold up her head and routinely choked on even liquefied food, nutrition shakes, and thickened water. My parents had been very clear about their end of life wishes, and I felt confident that she would not want a feeding tube to continue a life as devoid of any pleasure, even pleasure in taste, as she had been living for months. I did not allow a feeding tube to be placed, and she died apparently peacefully within two weeks. I am very glad to read that this practice at the end of life is falling out of favor.
Mebster (USA)
Family members of nursing home patients should be aware that medical providers will sometimes continue to push for treatment until they've signed with a hospice provider. Hospice protects the home and its doctors against liability for "not doing enough."
EricM (Seattle, WA)
I love to eat, but I have made it clear to my family that if the time comes and I don't want to eat, or can't eat, and I have a terminal disease, then please let me be. I don't even want to be spoon fed because really, if I can't figure that out then I have already passed from this world.
Ellen Guest (Brooklyn)
My husband stopped eating anything but pudding by the time he had to be hospitalized, then transferred to a nursing home. He could speak and knew us but had been eliminating foods for months. Even the pretty young therapist couldn't get him to eat. He died just 40 days after leaving home. The last day he was in pain (a kidney stone I expect) and a doctor brought in asked about a feeding tube; he said "No!" loudly and clearly before I could even pull her aside to tell her. It's not "starving" as someone told me I was doing to him. It was peaceful.
jb (ok)
I'm sorry that insensitive person said that to you.
Andrew (NYC)
As an ICU physician often involved in end of life decisions and a child of a mother who directly died of dementia and father who was demented for years before succumbing to another illness, I offer the following sobering observations:
Doctors can prolong death almost indefinitely but that is not the same as prolonging life or saving someone's life.
The vast majority of Doctors would not want this kind of aggressive care for themselves or their significant others.
The burden of pain, suffering and cost of providing death prolonging interventions that offer no meaningful quality days of life are grossly underestimated.
Advanced dementia has no cure and it is a fantasy many families have that a cure may be discovered any day and their loved one saved and their quality of life resurrected.
Most people who have seen extremely demented people wither and die would not want that situation prolonged in themselves.
Phil (Denver)
In my experience, the race issue is related to trust.

It seems to me that African American patients often think we are trying to withhold necessary care rather than trying not to provide futile care. They are also more likely want aggressive end-of-life measures.
Cheryl (Tucson)
I recently watched a video from Barbara Karnes, a nurse and author of Gone From My Sight - the Dying Experience. In it she goes to great lengths to explain that we die from starvation and thirst. It is the dying process -- it can be more quick as when one is terminally ill, or it can take a couple years as when one is very old.

To withdraw from eating and drinking is part of dying. In fact, to force feed someone when organs are failing would be painful and cruel. In my training as a hospice volunteer and in my experience losing loved ones while in hospice, it becomes evident that, for the most part, the food and drink offered are for the comfort of the survivors, not the dying.
Harry (Michigan)
Feeding tubes for end of life care? This is insane and beyond cruel. FYI , you can refuse food if you so choose. No one can force you to eat, unless you live in Florida under a republican nightmare.
Susan (Eastern WA)
Whether or not to get a feeding tube can be an impossible decision. Our father lived for five years after his was placed, due to a stroke, a broken hip, and several other health issues that piled up on him in a short time. No one was sure how affecting the stroke was, and so it seemed reasonable enough. After several other more minor health problems he emerged some months later with vascular dementia, which had led him to be less than cooperative in his rehab. He was never again ambulatory, but was able to help with transfers, even making them himself sometimes (to the horror of his caregivers). The dementia from his stroke was of a stable kind--he did not get worse, and always knew us. He was in a bad way when our mother died, but got over that too. There were times when he could take a lot of his food by mouth, but that ability came and went. Thankfully, he died just days after a liver cancer diagnosis.

And at the same time I had a feeding tube for about a year due to complications from cancer treatment. For a while I thought it might be permanent, but eventually I had enough throat dilations that I could return to eating by mouth.

It can be a very hard decision, but once it's done it doesn't have to be used forever either.
Cheryl (Yorktown)
Thanks in good part to articles and stories in the New Old Age about end of life issues, I knew enough to refuse insertion of a tube for my uncle, which was about to happen while he was hospitalized after a severe fall, which further diminished his ability to understand his environment and communicate.

Believe me, you have to have a grip on the issues before you walk in and because the various doctors involved are not likely to tell you anything beyond how it will help the person "gain a little weight." That this is while demented patients' arms are tied back, so that they won't pull the tube out--- I didn't find the Drs. uncaring, but sort of removed, reluctant to face the real issue - in what way is this going to make living better in the time left? And one nurse did make it ever so clear that my decision was a death sentence. Without preparation, I might have crumbled, and failed him.

Education is helping patients' advocates make better decisions. If you happen to have gotten to a point of choosing a good hospice, you should find support there. And of course all of us still able should make our desires clear while we can, so that family members or others are not torn when faced with the decision.
ED (Wausau, WI)
As a medical student we had a patient that despite being tied down managed to remove his nasogastric tube. As the very lowest member of his medical team it was my job to reinsert it every morning, it was the most disturbing and inhumane thing I have ever done. Even more disgusting was participating in the insertion of a feeding gastrostomy on a severely developmentally disabled child that was born with among other severe anomalies, agenesis of the corpus callosum who's only sign of life was that he screamed 24hrs a day while lying in the floor in fetal position, he was skeletal and otherwise brain dead. It scarred me for life.
Cheryl (Yorktown)
Truly horrific tasks, one that make no sense from any point of view.
Michael (St. Paul)
Feeding my mom was the highest quality interaction I was able to have with her and I timed my visits to her mealtimes. I can't imagine if that had been taken away from me. Not being able to swallow is the body's way of shutting down--if anyone is playing God, it is those who would attempt to thwart the body of its natural processes.
SGK (Austin Area)
My mother-in-law, a few years ago, wrote a clear and specific letter to her family about what she wanted (and did not want) in the event of ever coming to the end of her life with Alzheimer's -- which she now has. It has been extremely helpful to her family, as well as the care facility staff where she lives. We are all fortunate that virtually all involved are on that same proverbial page about such things as tube-feeding or not (it is clearly 'not!').

Reading Atul Gawande's book "Being Mortal" is a somewhat grim but enlightening look at death and life in our society. We have to put aging and death in a new context - that of higher regard for the person whose life, and death, deserve dignity, love, and respect ---- more than insurance coverage, life at all cost, and convenience of either family members or institutional staff. The 'feeding tube' inserted into a terminal stomach is symbolic of the myriad systems that prevent us from seeing a hard but simple truth: death may be difficult to accept, but it doesn't have to be fraught with forms, fears, and the horrible complexities we have unfortunately laid upon it.
deburrito (Raritan NJ)
This happened with my mother as her dementia advanced: she was unable to remember how to eat. My father had a discussion with the nursing home doctor & decided it was more human to not insert a feeding tube. That said, it was terrible to watch my mom starve to death. Gut wrenching, in every sense.
Honeybee (Dallas)
I'm so sorry.
While it was probably hard to watch, your mom may not have suffered as much as you did or as much as you thought she did.
At least, I hope that's the case.

As for me, as a mother, I would rather suffer if it meant my children would be free to go on with their precious lives sooner. Once dementia has a hold on someone, there's no going back. It's over.
ED (Wausau, WI)
Do not think you left your loved one die of hunger and in anguish. The fact is patients in extremis do not feel hunger, furthermore, after discontinuation of fluids they quickly decompensate into a coma and are absolutely oblivious of the whole situation.
Concerned Citizen (Anywheresville)
I had the same experience with an elderly aunt last year. She had dementia, and went into sepsis from a urinary infection (neglected by her AL home). The hospital put her on antibiotics and cleared up the sepsis, but she never "came out of it". Her dementia was worse, she didn't recognize anyone and couldn't speak but only a few words or grunt. She was not swallowing foods or liquids. In a panic -- this came on very suddenly over about 48 hours -- I let them put in a nasogastric tube (not as big a deal as a stomach tube, and easily removed). She improved physically, but not mentally. She was in a semi-comatose state, and no hope of improvement -- she was 93 -- so I said "that's it" and called hospice.

But she went to hospice, and died by inches anyways -- a long, lingering death from dehydration (just horrifying to see) and starvation, helped only into an unconscious stupor with morphine.

It was so awful, it has caused me to rethink my own living will and end of life instructions. Death from dehydration is miserable, agonizing and painful -- not a kind or gentle way to die. I had no idea, and I asked for help from hospice (a highly regarded one!), nurses, doctors, specialists. There are no answers, and nearly every caregiver ends up on their own to navigate this -- no good answers, just bad ones that you are FORCED to make, in very short time frames.
epdawson (madison wi)
This is an issue for many diseases, whether the affected is young or old. I'm a 69 year old artist who was recently diagnosed with Bulbar ALS, after 15 months of slowly loosing my ability to speak and swallow. Although I'm still independent enough to drive and continue my art, I will not accept being fed by a tube and having to breathe with a ventilator. Using those devices could extend life for months or years, but its not a life I want.
ED (Wausau, WI)
Its your perfect right to do so. My father died of ALS and declined it as well, I personally removed his feeding tube at his request. He died the next day in my arms.
A. Stanton (Dallas, TX)
People who do this for (to?) people they purport to love should be required to prove they are mentally o.k. before being allowed to proceed.
Alice (Texas)
Prove who is mentally o.k. - the patient or the caregiver? Perhaps a conversation occurred some time earlier regarding "extraordinary" measures, and a feeding tube was considered an extraordinary measure. I know I have had that conversation with my spouse and children, and when the time comes, should it ever, I hope they have the courage to do as I have asked.
jb (ok)
If you had been through seeing the suffering of someone you love so much, the hell that they can go through being prolonged, like my twin's was, you would have some idea of why we see it as we do. You would never put a dog through it, and no, it is not dignified, humane, or same to allow it done to someone you love.
Sue (Vancouver BC)
A. Stanton: Do what? Insert the tube, or refuse it?
Ron Wilson (The Good Part of Illinois)
Although I would agree that a decline of tube feeding for these patients is a good thing, does every story in the New York Times have to bring up race (specifically referring to the question of doctors spending more time with white families discussing options)?
carol goldstein (new york)
As the white half of a couple where my husband's father was from a black family and his mother from a white family (in the 1950's!) I'd like to tell you why I think race is relevant here. I watched his mother, his father and my mother all die of what I'll lump together as complications of old age. None of the three had dementia per se, although none died compos mentis.

African Americans have historically had little reason to trust the medical establishment. The extreme example of that was the egregiously immoral Tuskegee syphilis experiment, but more generally the overwhelmingly white medical establishment did not provide equal care to African Americans. In my small sample observation this led both to being suspicious of recommendations to consider less intervention (no ventilator or feeding tube in the end stages of vastly metastasized cancer) and accepting without much question the idea that everything possible should be done. It did not lead to what I considered a good result for his father, but rather to several months of what certainly looked and sounded like a man being tortured. I wasn't there enough to successfully intervene because I was mostly 600 miles away with my dying mother.
Stephen C (NYC)
Some people do not believe racial discrimination is no longer an problem facing Americans, so it is important to point it out whenever and wherever occurs, especially when there is supporting data.
Sarah (New York, NY)
When the treatment rates are so different between races, how can you not talk about it?
Bella's Mom (New York, NY)
Thank you for this article. I had to make the decision last year for my mother. While the Rehabilitation facility pushed the idea of feeding tubes and IV's, I was able to speak with a former ICU nurse who pointed out the pros and cons of both and in declining both, I feel I gave my mother a gentler end of life that she would have otherwise endured.
Beth Birnbaum (Queens)
My father did not have dementia, but sarcoma that had wrapped itself around every organ in his body. The surgeon said he wouldn't make it through the weekend. His doctor couldn't accept that, and put in a feeding tube. For 5 1/2 months, this former WWII demolitions expert, deep sea diver, fireman and hospital administrator lived his worst nightmare, dying by inches in pain. He went down to 70 pounds, but still lived. One day, by mistake, the nurse took out the feeding tube, and my mother refused to let them put it back in. I went to see him the next day, he was stronger, spent the time looking at pictures of his granddaughter, and I almost believed he was getting better. He died looking at those pictures that night, finally allowed death with dignity. Those 5 1/2 months of suffering he went through were far worse than death.
lfkl (los ángeles)
My condolences to you and your family and so sorry your father had to go through that hell. That said the elephant in the room is the cost of procedures that prolong life for life's sake or the more likely reason of making people pay for as long as there is money to be made. I will guess that if there were no insurance covering your father that feeding tube would never have gone in. If the hospital bill was for $2000 a day which probably a gross underestimate I'm sure the cost of making your father suffer for 5 1/2 months was well over $300,000.00. Money not well spent.
Lisa (Boston)
The fact that "his doctor couldn't accept that" does not justify what he did.
My hope is that organizations like Compassion and Choices and sympathetic medical professionals will help us prevent many of these all-too-common situations through counseling and legislation.
There are at least 2 reasons why you might want to ask that doctor why he put in the feeding tube: 1) This will probably be on your mind for the rest of your life, and 2) He may not even realize how much unnecessary grief he caused.
My condolences for what you and your family had to endure.
ED (Wausau, WI)
The ultimate right for his care lies in the next of kin, if the designee was yourself you could have demanded for it to be removed. No Dr has the right to force futile treatment, if he had insisted, a report to the hospital ethics board would quickly fix the issue.
etfmaven (chicago)
Thank you. I found the links very helpful. My siblings and I face these questions as our mother continues her decline deeper into dementia. We are all on the same page regarding this procedure and hope we remain so. I know these decisions will be much harder to make when the time comes but at least there's information and a generally supportive healthcare system.
Witness (Houston)
A widowed relative with dementia ended her days in a nursing facility, a few years after a daughter took her into her own home and made caring for Mother her project to show the world. At home, the daughter fed her bewildered, mute mother so much -- and so poorly -- that the petite woman grew two dress sizes and could barely walk. In the nursing home, the "dutiful" daughter insisted on months of tube feeding for the increasingly frail, unaware, and eventually comatose mother, despite protest from other family members. In reality, it was abuse of a corpse.
aed (brooklyn)
why is it ok to call a living person -- however disabled, physically and cognitively-- a corpse? and to judge another's life as not worth living? surely caregivers are often abusive in their attempts to extend life, whether or not they intend to be, as your comment points out. but I am honestly saddened by the ableism of much of this conversation. a friend of mine has said only half jokingly to shoot her when she can't use the bathroom by herself. it's her life, but at the same time I wonder why so much shame has to attach to dependency on care. how much suffering and fear could be alleviated if we would stop hating ourselves and each other for our dependency? we all enter this world needing care with feeding and toileting, and cognitively dependent as well; most of us exit this world the same way and many of us will experience dependency and disability along the way. i have friends who use g tubes or other devices as part of their regular life. and I get it's different maybe for someone who is dying. I don't know what it's like to help care for someone who is transitioning toward death and I respect for those who do. but I just wish we could be kinder in how we think about disability, dependency, and what makes life "worth" living.
Marilyn Wise (Los Angeles)
Some religious views support extending life as long as possible, which might help explain the black/white, north/south differential. Tube feeding may also increase profits. Better education and facing the fact that death will come, anyway, may increase refusals to tube-feed.
EMWMD (Bethesda, MD)
Thank you for this article. When I learned my lapsed trade back in the 80s, percutaneous stomach tubes, and even nasogastric tubes, were the rule after oral feeding failed to maintain weight and it was the rare, brave, and compassionate, physician who would question their use. Today, as Ms. Span points out, we know better. However, "G-tubes" are still often proposed or recommended for individuals at the end of life who are at risk for choking and death from pneumonia due to aspirating food. This may seem like a more compelling reason than the risk of a gradual death from starvation, but it often ends up depriving the sufferer of the last remaining pleasure. Informed individuals and families need to make their own decisions, but risk loses meaning in those circumstances.
Concerned Citizen (Anywheresville)
Death from pneumonia, as a result of aspirating food or fluids, is actually a natural and logical way to die. It is also vastly less painful than dying of thirst and dehydration!
Tony Nowikowski (<br/>)
About a year and a half ago, my 86-year-old mother (who was already exhibiting some signs of dementia, and living in an assisted care facility) suffered a stroke. It left her unable to communicate, and, more critically, unable or unwilling to take any nutrition by mouth.
Fortunately some years earlier she had written up very strict advance directives. When I presented these to her medical team it was not difficult to convince them that a feeding tube would qualify as a "heroic" measure that she would not want.
We moved her to hospice. As with Mrs. Jewell, she slipped in a coma after a couple of days, and in just over a week she was gone. Since then I have not doubted for an instant whether my decisions on her behalf were appropriate.
As an emergency medicine physician I have seen more than my fair share of feeding tube fiascos, almost always in the elderly demented nursing home patient . The tendency is medicine is always to do more, in this case I am glad to see we are finally doing less . The best thing we can do for ourselves and our families is to have frank discussions about our eventual mortality and what we want for ourselves . It is a tremendous burden on family members to have to make the decision for someone they love in a crisis situation .Being upfront and clear about what you want frees them of that burden . That is probably the last and greatest gift you can give .
carol goldstein (new york)
Just don't put it off to be the "last gift" or you may not get there. One thing I did not wrestle with being the final-care surrogate for my mother was knowing what she would have wanted. She had told me that clearly on numerous occasions. Mostly car rides through rural Ohio.
specs (montana)
When my mother was on Hospice and we were trying to feed her, the hospice nurse said, "you need food to live, you don't need food to die."
Jane F (<br/>)
This is a difficult moment--My mother recognized it way before I did and refused to be spoon-fed. She died a few days later. She was ready. Having spent her final years near her, I was too.
Carol Zimerman (NYC)
Whoa there. I wouldn't go blaming the predatory, for profit medical industry for the use of feeding tubes. I'm a Canadian who has lived in the US for 10 years. My dad, who lived in Toronto and had advanced dementia, was cared for 24/7 by my mother. He was spending more time in ICU after several bouts of aspiration due to his inability to swallow even puddings. When we asked the doctors at our Toronto hospital for their advice, they recommended a feeding tube. Remember, Canada has a not-for-profit medical system. I asked a dear friend, an American palliative care doctor, for her advice. She explained that doctors take a Hippocratic oath to do no harm. "Practice two things in your dealings with disease: either help or do not harm." The doctors were simply trying to extend his life even while knowing dementia is a terminal illness. We declined the feeding tube for all the same reasons mentioned in this article, found a wonderful hospice and helped my father have a peaceful passing, embraced by his family. My advice is to consider what your parent would have wanted from those last days and months of their life. To be bedridden, frightened and in pain or to have a good death.
KJ (Tennessee)
I feel strongly that your mind is the essence of you, and once it fails there's no reason to keep the body going. When I had my will and end-of-life documents drawn up I told my attorney that in the case of irreversible mental disease or decline, I do not want to be fed or hydrated artificially. Ditto for antibiotics or any other life-extending treatments. I could tell that my lawyer was disturbed, but my wishes were documented.

Then he told me they would never be honored by medical staff, at least in Tennessee.
Cheryl (Yorktown)
As I understand it, the problem is that when you become mentally incapacitated, you can no longer make decisions for yourself, so in a malicious catch 22, your previous decision is invalidated when you can no longer explain yourself.
Concerned Citizen (Anywheresville)
Trust me, KJ, you do NOT wish to die of thirst.

It is a horrible, agonizing death. Even dementia patients feel pain and thirst.

Starvation is not the same. You just get weaker. Thirst is constant, grating, ongoing with no relief. Your lips are dry, your skin dries and shrinks and cracks. Your tongue literally dries out. Your EYEBALLS dry out.

No morphine will ever relieve THIRST. It just makes you loopy and shuts you up.

I have clocked enough time in hospice and nursing homes, and death beds, and I know this to be a fact.

That does NOT mean I believe in feeding tubes or extending life unnaturally. Let a dying patient drink all they want. They will aspirate the fluid and get pneumonia and pass in a short time naturally.
Bill In The Desert (La Quinta)
All you need to witness, is a friend enduring this procedure and you will do all you can to prevent it happening to yourself. An elderly friend suffering from dementia lost the ability to swallow. The spouse, against the wishes of the family, insisted on tubes - in and out. The poor wretch suffered for seven years showing zero sign of consciousness. I often wished I, or someone, would go in and pull the plug. It was nothing short of torture, which the spouse was unable to recognize. You must look out for yourself at the end. Plan for it.
So Cal RN (Simi Valley)
It is a straight-forward matter, simply write out your instructions NOW for every scenario of medical decision-making and make copies for each family member to keep available, who will then act on your plan/wishes, as each issue comes up. And simultaneously tell each one, do not fret, or be confused/uncertain when your own end is near, but instead, refer to the exact instructions. It will save them from indecisiveness, and fear.
Dee (Calif)
I think this begins with the doctors. Busy doctors, when confronted with the difficult problem of "not eating," instinctively reach for the cure of "insert tube." I'm seeing this improve lately.

You can't discount the effect of the families. For all the talk about the need for discussion, it is common for families to consciously avoid the subject. When the subject of limiting intervention is broached, they sometimes interpret this as an inhumane lack of "optimism" which they reconstruct into a perception of personal prejudice.

As for Living Wills, they aren't as good as everyone tells you. The majority are written in boilerplate legalese as constructed by attorneys and I have no idea what they mean when I have to make a decision right now. The best solution is to think about the what-ifs and then write out in your own voice who you are and what you want. I've read a few of these letters over the years and they still bring tears to my eyes with their warmth and wisdom.
Jaque (Champaign, Illinois)
After my mother passed away in 1970's with Alzheimer's and feeding tubes, we as a family decided that no other family member with similar situation will be given a feeding tube. Unfortunately four of my siblings also developed Alzheimer's in their 60's. In the last days of their lives they were fed a with liquid dropper of pureed food, but none were on feeding tubes. I have gone one step further and instructed my immediate family, that if I stop eating solid food, they should stop making pureed food for me. Of course, no feeding tubes either.
Marie G. (New York, NY)
How interesting. The criteria for 'quality of life' has been unequivocally defined by those in this article. I suppose they purport to know what patients with dementia are thinking all of the time. Do they also know how a person with cerebral palsy would define 'quality of life'?
Sharon Edelson-Eubanks (California)
Advanced dementia has been medically/scientifically defined. People with irreversible advanced dementia do not have the cognitive ability to appreciate and quantify their own quality of life although they can respond to painful stimuli. As some might callously put it, there is scant or "no there, there."

An individual with CP may or may not have the fully or partially functioning cognitive ability to define their own quality of life. Their CP is a separate condition from their existing understanding of their life and world, even if they are unable to express it. The individual with advanced dementia has neither the understanding of nor the intellectual capacity to say yay or nay at the time a decision must be made to perform an invasive procedure that has been proven to not improve the quality of their life.
eve (san francisco)
In these articles there is always someone who comments with a false equivalency. Dementia is not cerebral palsy. And we are talking about end of life.
carol goldstein (new york)
I hung out a lot at my mother's retirement community in the decade before she died. It was a CCRC, so a majority of the residents were independent living folks. They also tended to be people who had given some thought to how they would want the endgame to go. It was a subject of discussion, especially when some mutual friend's health was declining. The overwhelming sentiment was that quality of life most involved keeping at most of their wits as long as possible and not being in so much pain that it was impossible to think of anything else. There were of course a few "do everything" dissenters; interestingly some of their spouses had a non-spouse as health care proxy. Physical capabilities, including hearing, seeing and speaking conventionally, were nice to have but not as important. I would think that would not be dissimilar for a person with cerebral palsy.

[In my tweenhood I spent a lot of time around people with cerebral palsy because at that time my mother was the staff director of the Dayton Cerebral Palsy Association (a UW agency). Her childcare method when there were evening and weekend gatherings involving CP folks and their families was to take me along and expect that I would socialize. That doesn't make me any kind of expert, but it does mean that treating folks with CP as regular people seems normal to me.]
A Little Grumpy (The World)
This past winter I tended to the mother of an acquaintance on her deathbed. He could not be there because he is stationed with the Air Force in a different country and had already taken leave many times. On this particular afternoon he was on his way. But time was short.

This woman, whom I had never met before, lay on her hospital bed, moving in and out of consciousness, pleading with me for water. "Water. Water. Please give me water." Although her death was imminent, the nurses would not allow me to do so. They said she would surely aspirate. She would surely choke. First we have to swab her mouth they said. Only bits of gelatin they said.

So I administered spoonfuls of gelatin into the mouth of this desolate, lonely, dying woman. Bringing her no relief. No comfort. She pleaded with me for hours.

By the time her only son arrived that evening, she was done talking. She never spoke again. I spared him the details of my long afternoon with his only living relative. I did not tell him that our conversation existed only of her begging me for a sip of water. I will never understand why we have trapped ourselves in this life. These habits.

I do not want to die like that.

The woman just wanted a sip of water and I did not honor her last request. The memory of it haunts me.
jb (ok)
You did the best you could in a cruel situation - cruel to you, too, for another person's sake. She is out of any pain now; it's time for you to let your own pain go. You did good.
Ruth (Texas)
First of all, how kind you were to be there for your friend & his mother. Perhaps you should reframe your thinking. Perhaps if she was given water she would have choked, and the outcome even less favorable. Your friend was able to see his mother, however briefly.
carol goldstein (new york)
I wish the facility where you kept death watch had been better equipped.

There is a relatively simple tool that can be used to moisten by swabbing the mouth of a person who can no longer safely drink. It looks a lot like a lollypop but instead of candy the item on the end of the stick is a fairly stiff sponge. I was moistening one so I could swab my mother's mouth when she died with a young aide holding her hand.
roxana (Baltimore, MD)
I worked in nursing homes for years. Tube feeding is horrible. The tubes are forever stopping up. Also, most of the better homes won't accept a lot of tube feeders so they end in the worst places. When a patient stops eating, it's Nature's way of saying 'Time to go." Why is it OK to do cruel things to people that we would jail pet owners for? What if I put a tube in my sick, bony cat, tied it up and force fed it? Think about that a minute....
Susan (Eastern WA)
A lot of this (treating the cat) would depend on the nature of her illness. If she were in a decline from something incurable, or only curable by very expensive means, no one would fault you. However, if she were in need of nutrition for something acute and obviously survivable, a tube is a good alternative.

The one I had for over a year saved my life when I couldn't swallow anything.
Concerned Citizen (Anywheresville)
Actually, people do that to elderly sick pets all the time.

It's not that simple. My dad was dying of cancer, and the hospital ASKED HIM if he wanted a feeding tube. It would only prolong his death and pain. HE SAID YES. Dad did not have dementia and was entirely in his right mind.

HE WANTED TO LIVE. So they put it in, and he lived six more weeks in pain.

But it was his choice. The problem is when we must decide FOR OTHERS and that is often the case with dementia patients. It is not an easy choice, and there are NO good choices. I give my greatest empathy to those put in this position.
Marie G. (New York, NY)
Concerned Citizen and Susan,
Thank you for showing another side of this. Often times people making this decision for someone else, choose the knee-jerk reaction to say no to a feeding tube. In some cases this decision is not made for the benefit of the patient.
GY (New York, NY)
As hard as it is to have a frank discussion about these issues with your loved ones, it is important to do so while they are able to speak and decide for themselves. It's also important to discuss your advance directives with caregivers and physicians and to give them the appropriate completed legal forms.
Everyone over the age of 55 would be well served to put some measures in place for themselves "in case of" not just dementia but also damage from a stroke, debilitating injuries from an accident, or other incurable disease causing extreme disability.
More information for NY residents and forms for New York State are at this link ; these forms when completed and signed are accepted by hospitals, nursing homes and hospice care managers:
Annette Pretty Nice (Oklahoma City)
Everyone 18 years of age should appoint a health care proxy who knows their wishes.
Steve725 (NY, NY)
As usual, our predatory, for-profit medical industry has an ulterior motive for keeping people alive beyond all reason and humanity. Living wills are great for the educated and financially astute, but the vast majority who spend our lives toiling as the working poor are unlikely to have one. At a young age I watched an elderly friend be kept alive on a respirator and feeding tubes for exactly 3 months by our local hospital. She had no living family and 3 months was the waiting period to see if a family member crawled out of the woodwork. The last time I saw her conscious, which was the day she was taken to the hospital, they had tied her hands to the gurney b/c she was desperately trying to free herself from the respirator tube that had been rammed down her throat against her will. Only when the 3 months was up would the hospital decision makers set her free. We show more humanity to our dogs and cats when we humanely put them peacefully out of their misery than we show to our fellow human beings.
ED (Wausau, WI)
That, in fact, is absolutely and completely untrue, if there is anything the overwhelming majority of physicians abhor is providing futile treatment. The overwhelming majority of cases are due to patients that have not left advanced directives and family members that cant decide amongst themselves what to do. The recurrent implications that physicians only see patients as dollar signs is a perverse myth.
Mark Rogow (Texas)
(Not Mark) Was this a state law? What would have happened if someone had shown up and they had let her die earlier? Just because you think you know the reasons doesn't mean you really do.
Quickbeam (Wisconsin)
I've been a nurse for 30 years and a nursing assistant for 10 before that. The decline in feeding tube procedures is heartening. At one time, virtually all my nursing homes patients had feeding tubes. We'd have one nurse who just did re-insertions all night after they were pulled out by residents.

Its long been my contention that this is more a reimbursement issue (surgical fees, Medicare coding) than actual succor for the dying.
Ishuzu (northern california)
I've been a nurse for only 4 years, but I too am heartened by this change. I have only one feeding tube on my floor and that patient is still alert, able to walk with PT, and is expected to discharge home in a month or two after he recovers from a broken hip.
The issue remains that there is much higher reimbursement for tube feeding, then for hand feeding, (with the close supervision and coaching needed to feed a patient with dysphagia) and often takes less time to manage during a given shift.
I am hopeful that as feeding tubes become less standard procedure, doctors will become more comfortable discussing the negative effects of the procedure, and the decline in use will equalize over the population.
Cheryl (Yorktown)
And more funds should be allowed for hand feeding, which requires infinite patience and encouragement.
ED (Wausau, WI)
In fact you are absolutely wrong, keeping a dying patient on tube feeding has never been a source of wanted revenue by anybody, in fact reimbursement barely covers care. What changes in reimbursement has achieved is to incentivize physicians to more strongly push for a quick resolution by the next of kin. If there is something physicians absolutely hate is providing futile care.
Joanna Gilbert (Wellesley, MA)
Unless it is a temporary measure, why would one agree to this? My father's (horrible) physician and my sister convinced me against my better judgement to do this to my father (who had Alzheimer's) as they insisted it would be temporary. It wasn't and it was clear that my father had stopped eating for a reason (?intentionally?) and was extremely disturbed by this treatment, he tried to pull it out. He soon passed away from kidney failure but once the feeding tube is in place, it is emotionally difficult to remove it without judgement of others. One can know in their heart what is the "right" course but that doesn't mean it is always the course one gets to choose.
NRichards (New York)
When my my mother had dementia, and began to lose her ability to feed herself, feeding tubes were recommended as an option several times. My siblings and I responded - with horror - with a resounding "no". We and the aides at her care home patiently fed her, which increased her interaction with others. It's difficult at first to feed one's own mother, but it turned into a pleasant ritual for us - just as it is for a parent feeding a child, if one sets their mind to thinking of it that way. The thought of 10 or 20 percent of dementia patients on feeding tubes in a nursing home brings to mind something out of a dystopian science fiction novel. It's encouraging to know that this chilling, inhumane practice is on the decline.
Julie (Bombacino)
Thank you for drawing attention to their issue - feeding tubes DO save a lot of lives but obviously shouldn't always be used just because they can be. My son has been tube-fed for 5 years and would not be alive - he just started Kindergarten! - without it.

My only issue with this piece is the "feeding tubes cause diarrhea" - feeding tubes don't CAUSE diarrhea, it's the synthetic, corn-syrup laden formulas that are given through the tube that cause diarrhea! I am the founder of Real Food Blends, a company that makes 100% real food meals of people on feeding tubes, and know all to well from personal and professional experience the difference real food can make in a tube-fed person's body.
ach (boston)
Sometimes diarrhea results in tube feedings that are run in too quickly. FYI
axienjii (UK)
The following sentence, "Several studies led by Dr. Joan Teno, a geriatrician at the University of Washington who has often collaborated with Dr. Mitchell, show that they make no significant difference," makes a common and misleading error: It is not possible to prove that no significant difference exists, because the failure to find any difference may be due (for example) to limitations of the study. Once can only state that there was a failure to find a significant difference. Please ensure that reporters and editors have knowledge of basic statistics before such statements are unleashed upon the general readership!
axienjii (UK)
Furthermore, upon checking the original article, it turns out that the feeding tube condition was not randomly assigned to patients, hence any conclusions are correlational at best. The overall aim of the study was to describe the incidence of tube feeding amongst a sample of patients with advanced dementia. It is hard to assess whether the patients who received feeding tubes were inclined to have better or worse outcomes in the first place, and practically impossible to pin their outcomes down to the presence of absence of a feeding tube. The methodology and results of the study do not support the claims made in this NYT article. I have to wonder whether the author thoroughly read and understood the study, and whether the other claims in the article are substantiated. An example of irresponsible reporting and outright misrepresentation of a complex, carefully circumscribed study for sloppily drawn conclusions.
LLynN (La Crosse, WI)
My aunt spent well over a decade in a county nursing home thanks to Alzheimer's. Her daughter in an effort to prolong her life had tube feeding instituted. Over a number of years we saw her grinding her fist into her side. Nurses dismissed it. After she finally died, autopsy revealed advanced colon cancer. Such a tragedy.
jazz one (wisconsin)
This is so sad. And very illuminating. What a terrible, terrible trial for this woman. Who could be any one of us in our own declining years. Hard as it is to read and consider, thank you for sharing this. I can see I need more talks with family, and to tighten up my own end-of-life directive(s).
Turbot (Philadelphia, PA)
Pneumonia, often due to aspiration, is the "old man's friend".
Pnina Bright (nyc)
have you had pneumonia? it hurts!
i would say beware of medical cliches.
Kathy (Hawaii)
Thanks to W. H. Post for the comment about "advanced directives for healthcare." [My particular hobby horse.]

The advanced directive is commonly known as a "Living Will." I did a quick google search to see what would show up. There are a variety of sites, all seem generally helpful. Several charge a fee [usually under $50 & you should not pay more] to walk you through steps where you will end up with a valid living will.

Mayo clinic has a comprehensive & somewhat complicated extensive discussion about "living wills." A site [apparently funded by a national hospice, etc. assoc.] had links to each state's approved forms, which could work well.

As an attorney who's worked with many people on such documents, the only personal choice I would make is to deprive myself of food but not water [I just can't get behind it] & to add in, if necessary, that I receive plenty of pain medication so I don't care [& my living will requires that i be at the stage of "not caring" anyway.]

Another important point is that once you have a living will, make plenty of copies, put 1 at least on the refrigerator, carry them on your person, even when exercising, and make sure your relatives, friends, etc. know that you have one.

A potential breakdown is that unwanted medical intervention occurs before the living will is known. Then your survivors have to make the more difficult choice of taking you off life support. Good luck & spread the word.
Marilyn Wise (Los Angeles)
The California Medical Association has a form advanced health care directive that is widely accepted by hospitals and doctors. I travel with mine.
Cheryl (Tucson)
Another resource to begin the discussions of advance directive is the hour-long program, Passing On, produced by my local public TV station. You can find it here:
epistemology (Media, PA)
I agree with Kathy that planning for end-of-life care is important. However I strenuously disagree that Advanced Directives are the way to go unless there are no loved ones to protect you in this most vulnerable time. Advanced Directives are a laundry list of what you want done if you can't speak for yourself. The better alternative is a Durable Power of Attorney for Healthcare. This designates a trusted loved one with whom you have discussed your wishes to make all decisions for you if you cannot. If you have both Advanced Directives, and Durable Power of Attorney, and there is a dispute with family members questioning the Power of Attorney's decision, a judge will decide if the Power of Attorney's decision is compatible with what you wrote in the Advanced Directives. Those Directives, seen as you personal wishes, will trump what your loved one decides. And that decision will be made by a judge. If you want your loved ones to be the ultimate arbiter, have a Durable Power of Attorney, but NO Advanced Directive. Do you trust the lawyers and judges, or your loved ones? I have practiced Internal Medicine for almost 40 years, am regularly in the homes of my dying patients. I would much prefer to consult with a family member over your end-of-life care than a legal document. This is how it was since time immemorial before the lawyers got involved.
Honeybee (Dallas)
We have already had candid discussions with our children (1 in HS, 1 in college).

We've made them aware of the first signs of dementia that they're likely to notice--like disrobing at inappropriate times or asking the same question multiple times in an hour.

Once they see those signs, they have our blessings to deny all medical care (including antibiotics, but certainly any maintenance meds like blood pressure meds or sugeries) on our behalf. We've also told them that, once we're dead, we want them to dispose of our remains as cheaply and conveniently to themselves as possible.

We'll do our best to update our wills and any DNR kinds of paperwork as we age, but the last thing we want is our children spending hours of their lives either taking care of us or wracked with guilt about "letting" us die.
carol goldstein (new york)
Best/cheapest body disposal method is probably donation to a medical school for use as an anatomy cadaver. But it has to be prearranged. My parents' bodies both went to Wright State. The cost was nothing. We had very nice memorial services and told everybody that the money saved was going to the granddaughters' tuition.
Kathy (Hawaii)
As I noted previously, google the term "living wills" & you will find a variety of sites to help you have the proper paper work for your "advanced directive" which specifies the type of things you indicate. [If you use a site that charges in my opinion you should not pay more than $50 & many sites are listed which will help you for free.

Good job on being open with your children....that can be the hardest thing to do for both parents & children. [p.s I'm an attorney who has specialized in estate matters for years.]

Good luck & long good health!
mj (nj)
I admire your willingness to speak with your children about your end-of-life wishes. This is something my mother wouldn't do, and now I make her decisions for her with dread and doubt. A person with alz/dementia rarely recognizes they have lost reasoning and memory. Therefore, what the caregiver decides is often in opposition to what the person with alz/dementia thinks is best for him or herself. (I don't need a person to come in and help me or assisted living or a walker or a shower...etc.) Needless to say, one of the most difficult aspects of Alz/dementia is anosagnosia: a deficit in self awareness.

Please, though, consider doing more research into dementia and Alzheimers. Disrobing in an inappropriate place is quite late stage for most. Long before you do this, you will likely have set fire to your microwave by accident, taken your morning meds three times in one day, sideswiped your car with a mailbox and have no memory of it (and therefore feel deep in your soul that it could not have been you) and become angry with your children for their meddling when you are "perfectly fine."

You children should eventually get to know your primary care physician(s) and your attorney. Most primary care doctors would not stop meds in the early stages of Alz/dementia, because you are likely still getting enjoyment out of your grandkids, music, some TV/books, beautiful weather and good food. Even though you would be doing all of the cognitive impairment stuff I described above.
James Leonard Park (Minneapolis, Minnesota)
A deeper question might be:
How much longer should this patient be sustained?
What meanings are realized by each added day?
Giving up food and water is a completely legal
medical method of managing dying:
Mark Rogow (Texas)
(Not Mark) I can agree with food, but not water. Dying of dehydration is horrible. It is not an easy, painless death.
Kathy Sciacca (Massachusetts)
Inserting a feeding tube in my eyes is cruel punishment. A life well lived slowly stolen away by dementia. This was the right choice for my family when it came time for my dad at the end of his life. Our gift to him was a very peaceful end at 91.
W. H. Post (Southern California)
Those of us who do not want these types of interventions would do well to make our wishes known in lawful "advance directives for healthcare" and in personal letters to family/friends who might be called upon to serve as our surrogates.

Not only will such documents serve us well, they are also a kindness to those who will be charged with making these decisions.
Lisa Mayfield (Seattle, WA)
Such an important topic. Thank you so much for bringing attention to these challenges. As an Aging Life Care professional, we frequently see families struggling with these difficult decisions. Hospital MD's are often afraid to talk candidly with families about the pros /cons. I will share this with our team.
ach (boston)
As a nurse practitioner with a lot of experience with the pitfalls of tube feeding, I strongly feel that they cause a great deal of suffering. The burden they add to skin discomfort, increased trouble clearing secretions, association with greater risk of pneumonia, and the decrease in pleasure from eating far outweigh the benefit of keeping weight on. In our hospice practice we tried to view eating as a primary source of pleasure, and liquids like juice, can be thickened to make them easier to swallow(Product called "Thick-it") Slowly spooning ice cream and puddings helps family feel involved in their loved one's care, and is reassuring to the patient. When a person is reaching the end of the line with dementia, feeding problems are an expected condition, and because it is a terminal disease, weight loss is a normal outcome. An unconscious person should never be spoon fed at all, to do so can cause significant respiratory distress. Instead, the family and caregivers can transition to using moistened swabs to moisten the mouth, and chap stick can help with dry lips. Dehydration causes a lethargy that is somewhat hypnotic, and helps a dying person rest and feel less anxiety. If you have a family member who is losing weight and approaching end of life from dementia, and you feel unsure of what the best course of action is, ask to meet with a palliative care team. They can help you anticipate the needs of end stage dementia patients, and help you focus on quality of life issues.
Irene Campbell-Taylor (Canada)
I was, I believe, the first to publish an article on the dangers and futility of tube feeding in the terminally ill elderly. That was in 1987 and, at the time, I was accused of promoting euthanasia. Few seemed to notice that I advocated careful hand feeding instead of tubes. It has taken an unconscionably long time for these unfortunate patients to begin to be spared the misery of tube feeding. I am pleased that, more and more, decision-makers are opting for comfort rather than "scientific" recommendations.
Dr Irene Campbell-Taylor
Michael Cuddihy (Vancouver)
It is encouraging to see the trend but it wd be useful to know why there are different rates in different groups. change is hard even if it is a good thing. I understand it is even a bigger issue in Japan for some reason...
Honeybee (Dallas)
Dr. Campbell-Taylor,
There's a difference between a terminally ill patient who is mentally competent enough to make decisions and someone terminally ill with dementia.

I'm sure you'd agree that terminally ill patients who are mentally competent should have the freedom to choose tube feeding if that's what they want, regardless of their age.
Marilyn Wise (Los Angeles)
Veneration of the elderly; guilt feelings about ending life.
See also