What happens when a person dies alone, with no relatives or friends to provide information or help? Why do people die alone in some of the most populated areas of the world? A recent article in the New York Times delves into the topic by examining the life of George Bell, a man found dead in his Jackson Heights apartment in Queens, New York. I live just ten minutes away. His body was found after it had rotted to the point where neighbors noticed a smell. He knew only one person during the last decade of his life, a man he sometimes met at a bar. Yet with no family or friends in his life, it took over three months to identify his corpse.
I think that many readers may have started reading the article assuming that George Bell would, at the very least, have done some bad things to others. After all, before his death at 72, he spent nearly a decade living completely alone, with negligible social contact. How could that happen to an average, generally nice individual?
But when the later part of the article interviews people who knew George before he entered a state of near isolation, they have nothing but positive things to say about him. Early in life, he had a group of friends and was fondly known as “Big George.” He had a quirky sense of humor and enjoyed harmless pranks. He was honorably discharged from the army, and a certificate found in his apartment commemorates his jumping out of a plane in 1963. During his middle years, he frequented one bar, where he faithfully gave the bartender $100 every Christmas. He was very close to his parents, and took care of his sick mother. She suffered from arthritis, and he prepared her food and bathed her until she passed away.
In his twenties, George almost married, but the wedding was called off last minute by a parent. Yet the women he nearly married never fully gave up on him. The year before George died, she sent him a Valentine’s Day card. It said, “George, think of you often with love.” But there is no evidence George returned the message. When he died, he hadn’t spoken with her for years. George also had money. Upon his death, his assets amounted to roughly $540,000.
Later in life, George Bell started to become a “hoarder.” The kitchen in his apartment was splattered with trash and decades-old lottery tickets that had failed to deliver. The people who cleaned his apartment sifted through piles of random things – unopened bags of tube socks, packages of unused Christmas lights, four new tire pressure gauges.
George also suffered from shoulder pain and diabetes. He went from weighing 210 pounds at a point where he had some friends, to over 350 pounds when he lived in complete isolation. The bartender that he gave Christmas money to said, “He never went out to eat.” He was too embarrassed to go to a restaurant because he was forced to order three entrees.” George took medication but skipped pills during the day, saying they made him feel like an idiot. One acquaintence said of him, “George was in a lot of pain…I think he was just waiting to die, had lived enough.” I should add that the woman George nearly married also became obese. Unknown to George, she died of a heart attack, and was found by a neighbor clearing snow.
After I finished the article, I wondered why George had not spent any of his $540,000 trying to get help. I can’t be sure, but I have an uneasy feeling that maybe he tried to get medical care, but no existing treatments were able to help him. Or, to be fair, I wonder if George Bell avoided seeing doctors because he suffered from conditions that are often blamed on the patient.
Hoarding is considered by most to be a mental illness, but is extremely poorly understood. There is no treatment for hoarding except therapy, which often fails. Ironically, if therapy is successful, it usually requires a strong social network to help the patient cope. Hoarding is accompanied by a terrible social stigma. No biological markers have been tied to the illness, so people who hoard are generally regarded as lazy, weak, and pathetic. They are frequently shunned, and told things like “get it together.”
Obesity, even when tied to diabetes, only adds to this social stigma. The majority of doctors and friends I know believe obesity is caused by two factors – diet and exercise. According to these people, if you are obese, you eat at McDonald’s or something similar. Even when obese individuals venture into public and appear to make good food choices, people tend to assume they binge eat later at night. We see TV shows where people who are obese lose weight under ridiculous circumstances. Never mind that most of these people later fail to maintain their weight loss. These shows suggest to the public that any obese individual can become thin if they just really “try.”
I wonder how many of these illness-related stigmas George faced from not just friends, but from members of the medical community. For example, in a 2013 TED talk, Dr. Peter Attia tearfully recounts the way he treated a patient with type 2 diabetes. As a resident at Johns Hopkins, Attia was asked to determine if this woman needed a leg amputation. The woman was obese, and Attia had been taught in medical school that diabetes results only from overeating. As a result, he regarded her with great contempt. He remembers looking at her and thinking, “If you just tried caring a little, even a bit, you wouldn’t be in this situation.”
He contrasts this reaction to his demeanor just a few days later, when he had to tell a 27-year-old woman that she would die from advanced pancreatic cancer. In this woman’s case, he brings her warm blankets and coffee. He comforts her in every way possible. “Most importantly,” he says, “I passed no judgment on her because obviously she had done nothing to bring this on herself.”
Then, three years later, Attia was astounded to discover that he was gaining a great deal of weight. Despite exercising 3-4 hours every day, and eating perfectly according to the food pyramid, he is diagnosed with metabolic syndrome and insulin resistance. This causes him to become nearly obsessed with the possibility that, like cancer patients, individuals who suffer from obesity and diabetes might not be entirely to blame for their diseases.
Did George Bell’s doctors treat him with compassion? We’ll never know. What we do know is that he had given up on medicine during the later years of his life. Under these conditions, he entered what I call disease-induced solitary confinement. From what the Times article describes, I think he pushed people away from him due to embarrassment over his symptoms. In the last decades of his life, he chose isolation, lest he show others the terrible reality of his illness-ridden existence. A friend listed in George’s will, who had not spoken to him for ten years before his death, said the following when he learned of George’s passing: I haven’t been sleeping, my stomach hurts…I argued with him time and again to get out of that apartment and spend his money and enjoy life. I sent him so many brochures on places to go. I thought I understood George. Now I realize I didn’t understand him at all.”
In August 2015, the New York Times also published a report on solitary confinement. The article profiles social scientist Dr. Craig Haney, who studies the psychological effects of isolation on prisoners. He has interviewed inmates living for years in solitary confinement at Pelican Bay Prison in California. His research, and that of others, shows that living in solitary confinement can worsen mental illness, and produce symptoms even in prisoners who start out psychologically strong.
Many of the men that Haney interviews have undergone what he calls a “social death.” According to Haney, they often respond to their isolation by shutting down their emotions and withdrawing more deeply. Haney states, “The weight of what they had been through was apparent on them and in them….They were grieving for their lost lives, for their loss of connectedness to the social world and their families outside, and also for their lost selves…. Most of them really did understand that they had lost who they were, and weren’t sure of who they had become.”
The inmates Haney interviews are in prison following convictions for serious, often violent crimes. In other words, our society puts people in solitary confinement when they have murdered children, or committed terrible sex crimes. Even then, many argue that solitary confinement is too harsh a punishment for these inmates and should be deemed unethical.
This means that a movement is currently underway that may end solitary confinement for violent offenders in the USA. Yet, to my knowledge, there is no organized movement to end the disease-induced solitary confinement that results from the social stigmatization of mental illness or obesity. Patients who suffer from “invisible illnesses” such as Chronic Fatigue Syndrome (CFS) fall into the same category. These patients are frequently forced to combat the same detachment and loss of self as prison inmates. People with these illnesses are regularly pushed into disease-induced solitary confinement while living in the wealthiest country in the world – a country that prides itself on its medical system.
The most tragic aspect of this situation is that medical research exists today which strongly suggests that hoarding, obesity, CFS, and other terribly stigmatized illnesses are not a patient’s fault. Like cancer, these diseases have little connection to flaws of character, or in many cases even “bad” behavior. Rather, they too appear to stem from biological problems that are largely out of a patient’s control. Many of the studies that makes this clear center on the human microbiome. A large body of research now shows that the microbiomes of patients with these stigmatized illnesses may not be in a state of balance.
For example, in a review article in the journal Diabetes Care, Hartstra and team discuss dozens of articles that link microbiome dysbiosis to the development of of obesity and type 2 diabetes. The authors begin the paper by pointing out that even when obese and diabetic individuals make voluntary lifestyle changes in an effort to lose weight, they are often unsuccessful. For this reason they contend that “obesity is now considered a disease, rather than a willful choice.” They discuss a number of studies in mice and humans which show that gut microbiota differ in composition between obese and lean subjects. One study found that germ-free mice were leaner compared to their conventional counterparts, despite a higher food intake. Further, when intestinal bacteria were transferred from normal mice to germ-free mice, an increase in body fat was observed within 10-14 days, even though food consumption was decreased. These results strongly suggest that the obese microbiome is more efficient at yielding energy from the diet.
The same research team also conducted a double blind randomized controlled trial which studied the effects of fecal microbiome transplants in human males with insulin resistance and metabolic syndrome. Beneficial metabolic effects, including significantly improved peripheral (muscle) insulin resistance, were observed in subjects who received a fecal microbiome transplant from a “lean” donor. Introduction of this “lean” microbiome was also accompanied by significantly increased intestinal microbial diversity.
Further, Hartstra and team discuss the impact of bariatric surgery on measures of metabolic function. Patients who undergo bariatric surgery (RYGB) usually have a portion of their stomach removed in an effort to help them lose weight. The procedure has been shown to alter gut microbiome composition in both mice and humans. Several studies have shown that, in addition to inducing weight loss up to 50%, the procedure also decreases risk of type 2 diabetes and cardiovascular pathology. RYGB has even been shown to resolve insulin resistance faster than the actual weight loss, underscoring a potential weight-independent effect on metabolism.
It is interesting to note that RYGB has also been shown to significantly affect serotonin metabolism in both humans and mice, suggesting a regulating influence of intestinal bacteria on serotonin. Serotonin is a neurotransmitter connected to feelings of well-being and happiness, which means that RYGB appears able to impact what is referred to as the microbiome-gut-brain (MGB) axis. This axis comprises a number of neural, immune, and endocrine pathways by which intestinal microbes communicate with the central nervous system.
Several studies show that via this MGB axis, the gut microbiome is able to directly regulate neurological processes that influence cognition and mood. It has been connected to conditions including visceral pain, autism, obesity, anxiety/depression, and multiple sclerosis. According to Montiel-Castro and team, “recent data has revealed that the MGB axis has multiple effects on emotions, motivation, and other higher complex cognitive functions. Such evidence suggests that various forms of subliminal interoceptive inputs from the gut, including those generated by intestinal microbiota, may even influence memory formation, emotional arousal, affective behaviors, and decision making processes.”
For example, activity of the vagus nerve, which conveys sensory information about the state of the body’s organs to the brain, has been shown capable of being influenced by the gut microbiome. Other studies show that the gut microbiome, and pre-and probiotic agents, can alter levels of circulating cytokines that in turn have a significant impact on brain function. This means that the gut microbiome could easily play a role in driving many of the symptoms associated with “hoarding.” In addition, this article shows how, in sick individuals, pathogens can persist in brain tissue itself, where they can additionally drive chronic disease processes.
Furthermore, factors influencing gut microbiome composition often have little to do with diet. For example, a microbiome has now been shown to exist in breast milk. Cabrera-Rubio and team found that a mother’s weight impacts the composition of this breast milk microbiome. Milk from obese mothers tended to contain a different and less diverse bacterial community than that obtained from healthy subjects. The source of many microbes in breast milk is the mother’s intestinal microbiome. This suggests that if the mother’s gut microbiome promotes obesity, then the microbiome inherited by her child may do the same. Furthermore, there is a strong association between Cesarean section birth and increased offspring body mass index and obesity in adulthood. One study even found that the breast milk microbiome composition of women who gave birth via Cesarean section was significantly different and less diverse than that of mothers who gave birth vaginally. Thus, as obesity levels increase dramatically worldwide, many individuals enter the world with microbial populations that might immediately predispose them to weight gain and metabolic issues.
Even then, some obese individuals eat more food than their healthy counterparts. But research now indicates that expression of leptin, ghrelin, and other hormones that control appetite are regulated in part by signals received from the gut via the vagus nerve. These signals may be modified by the gut microbiome, suggesting that certain microbes might alter hormonal expression in a manner that increases food cravings and appetite. For example, one study found that Helicobacter pylori helps to regulate appetite by modulating levels of leptin and ghrelin.
In addition, certain gut microbes that aid with human digestion are simply better at harvesting calories from fat and carbohydrates than others. As I wrote in 2009, “If a species of bacteria aids in the metabolism of carbohydrates from the human intestinal tract, the presence of the microbe in the intestines of famine victims could save lives. However, in many Western countries, where rates of obesity are rising at an alarming pace, the same microbe might contribute to excess weight gain.”
This means that individuals born and colonized with gut microbes that predispose towards increased energy harvest, and/or decreased appetite control, may gain weight even when eating in a moderate fashion. Certainly almost everyone I know has a friend or relative who exercises and limits calorie consumption, yet still seems unable to maintain a healthy weight.
It is also very difficult for people to eat “well” in 2015, when so many foods are raised with antibiotics or hormones. A research team at MIT found that antibiotic resistance genes in grains and meat can be passed directly to humans consuming such foods. These genes might allow microbes capable of harvesting more calories from food to better survive.
Myriad environmental factors outside a person’s control can additionally cause weight gain even in the absence of overeating. For example, according to this article, researchers at the University of Missouri have shown that an organic compound called bisphenol-A (or BPA), used in many household plastics, can alter fat regulation in lab animals. A second study done at New York University School of Medicine, looked at thousands of children and found that those with the highest levels of BPA in their urine were five times more likely to be obese than those with the lowest levels.
Even the actions of medications used to treat metabolic disorders are being tied to the microbiome. The diabetes drug metformin has been shown to alter the gut microbiome. Researchers have found that metformin alters the bacterial populations in the gut in favor of species that exert specific cellular and immunological effects. This appears to result in improved glycemic control.
Unfortunately, most clinicians and nurses have not been educated about the above findings (and other related studies). Recently, I asked twelve friends currently in medical programs – aspiring doctors, nurse practitioners, or physician assistants – if they are taught about the microbiome in school. Several replied that they were. But courses tend to focus on symbiotic components of the microbiome and not on possible connections to disease. A few of these friends have investigated microbiome dysbiosis in disease, but on their own time. Still, one of my closest friends, a doctor, told me “Amy, obesity is simple, it’s just calories in, calories out.” In other words, he still believes that diet and exercise are the only factors impacting weight gain.
The above feedback may not apply to all medical programs. However, if in 2015 my health professional friends are not well-schooled in microbiome dysbiosis, how can we expect medical professionals trained even several years ago to understand the topic? For these individuals, continuing education programs on the microbiome must be a priority.
In fact, I believe that medical professionals of all ages must be required to learn about the microbiome. That is because, without such knowledge, they frequently treat patients in ways that can actually drive the progression of chronic disease. For example, well-intentioned doctors who haven’t studied the microbiome might over-prescribe antibiotics. Studies suggest that doing so can actually promote diabetes, obesity, and other related conditions. Several studies link use of antibiotics in early infancy to altered intestinal microbiome populations later in life, and an increased risk of weight gain. In adults, short-term administration of the antibiotic vancomycin has been shown to significantly impair peripheral insulin sensitivity, and was associated with a changed gut microbiota composition.
Further, some evidence suggests that specific dietary alterations might promote microbiome health. For example, certain patients benefit from greatly reducing sugar and carbohydrate intake. But these microbiome-based dietary approaches are not the standard of care. In other cases, specific prebiotics or probiotics might help address a microbiome-related problem. Certain patients might even be candidates for fecal microbiome transplants. But if medical professionals are not schooled on the microbiome, then their ability to consider such interventions is greatly stymied.
Medical professionals unfamiliar with microbiome dysbiosis are also more likely to repeat a scenario similar to that of Dr. Attia and the diabetic woman with the leg amputation. They might be less sympathetic towards patients with socially stigmatized diseases. This can lead patients with such conditions to lose faith in the medical community as a whole. Imagine if instead, clinicians regularly told patients with socially stigmatizing illness, “I can help you make some lifestyle changes, but your disease is largely not your fault. Components of your microbiome are likely out of balance and we will work together to address the problem.” Such patients would then have the self confidence to repeat these words to friends and family. They could let people into their lives with less fear of judgment, rejection, and embarrassment. They might avoid disease-induced solitary confinement.
This means that the microbiome research discussed on this site and elsewhere offers society the ability to look at people like George Bell with fresh eyes. One of the most relevant statements referenced in an effort to view others with compassion is, “There but for the grace of God go I.” In other words, any of us might resort to acting or feeling badly if our environment treats us in a cruel enough fashion. In the case of George Bell, or other patients with socially stigmatized disease, environment appears capable of literally impacting the microbiome in a manner that results in suffering and isolation. What if we took the word “God” out of the above phrase, and substituted it with, “There but for the overuse of antibiotics go I?”, or “There but for my inherited microbiome go I”? I’m not saying disease results from any of these factors alone, but you get my gist.
Yes, more research is needed before mainstream medicine hopefully acquires tools to reverse microbiome dysfunction in disease. Yet enough evidence now connects microbiome imbalance to socially stigmatized disease that society – doctors included – need not hold patients solely responsible for their symptoms. If this attitude were more widely adopted, then a possible revolution in empathy, and a possible revolution in compassion, could begin today.
Wow! Excellent article, Amy! Although not obese or diabetic I ran into a situation just yesterday in the hospital with an attending who came freshly on the scene and decided in all her arrogance that because tests did not reveal a definitive diagnosis that I was in here for no reason. I attempted to explain to her about intracellular bacteria and the Microbiome model of disease but to no avail. She flatly denied things that have been well documented in my chart such as dysautonomia (for which they are running continuous IV fluids), even though she is not a neurologist, and she claimed that Staph growth in my cerebrospinal fluid culture was “contamination” although the procedure was done steriley and the area was properly cleaned. I am sure the Staph was already inside me and that the growth in culture did warrant antibiotic treatment, yet others decided I did not need to know any of this until a nurse gave report in front of me and I caught what had happened. This attending GP would not tell me the strain of Staph although it is my right to be fully informed and treated. She has been reported for disciplinary action.
I had a 15 hour headache yesterday (not after the spinal tap but later, and have had others on and off over the past weeks and months). This required 2 or 3 doses of Morphine and Norco in-between to resolve the excruciating pain in head and back of neck and ice pack.
I have pretty much lost my own GP at Emory now, and only the Pulmonologist and his nurse are sticking by me now. I am pretty much being treated as “Typhoid Mary” so I know exactly what you’re talking about. These experiences make it increasingly hard to trust the next doctor you meet, and from a sociological standpoint it really puts patients who are medically very ill at a huge disadvantage. I believe that patients do what they need to d to stay safe in the only way they can, and the traditional system over-clinicalizes these coping mechanisms.
Although I’m not a hoarder I can relate in that once homebound it’s not that easy to clean, cook, and get groceries for oneself and if nobody offers to help you’re kind of stuck. For example; I spent literally 3 weeks trying to find a way to do my grocery shopping online. Meals on wheels here now only serves people 60 and older. I don’t know what a number has to do with being shut in, but I was denied because I’m just a few years short of 60. Farm Co-ops don’t deliver where I live and the few that do may send random foods you can’t tolerate (even though you pay out of pocket) and they make you sign up for auto-delivery and I can’t always afford it.
Schwann’s Home Delivery does not have truck service where I live and can only deliver via UPS (the worst and most expensive). $15.00 delivery is what I’d pay to order from India just about any item (not just food).
I’ve also been trying to set up other community help that comes to the home, but in doing so you also risk being forced out of your home, so it’s a precarious undertaking, to say the least. People want help but they want it delivered with dignity and don’t want their power removed from them just for asking. It is a very delicate matter and when you’re the only one there to stand up for yourself it can be scary to walk that thin line.
I’m finding my fine motor skills going and it’s harder each day to type on this computer. I soon need Dragon, as typos are so numerous it’s very tiring to correct each line but I think it needs to be documented before my hands cannot do it at all.
Trying now to arrange a transfer to Mayo Clinic or some more advanced research center, as it seems that my disease is rare; may be ALS or it may be a mixed movement disorder (combined with some other one).
Please contact me by email or on the MP site via PM, Maybe you know somebody who could help.
Thanks for bringing these things to light. We need people like you that other professionals will believe bringing these things to light.
Thanks for writing! I’m very sorry hear about your negative experience in the hospital. I am unfortunately not recommending any medical treatments or doctors at this point in time, so I don’t have any referrals for you. Nevertheless, I hope you can find other practitioners that are willing to address your concerns in a more proactive fashion.
You brought up some very good points about day to day challenges for people dealing with chronic disease. As you say, things that might be simple to others – like where to acquire a meal – can become incredibly difficult for people who are ill. Cleaning is also extremely hard for people who struggle with chronic symptoms. I know a decent number of people who are considered messy and lazy by others because they simply do not have the energy to clean up after themselves.
I hope that services for people who are ill improve in the coming years. That was part of the point of this article. If more of society can strive to better understand the struggles of people with chronic conditions, then hopefully more people will develop ways/services that might help such people in a manner that promotes acceptance and dignity.
Hang in there and all the best,
Sorry to hear that you have nobody to recommend. I guess you must be in the same boat then. That is a sad state of affairs that someone with these types of credentials can’t even get proper treatment/services either.
Seems this society is really good about the cord not quite reaching the socket in the wall. I wonder how many more have to die before humanity realizes it has to make a change and make things possible.
Keep hitting it hard. Somebody has to see the light sooner (hopefully rather than later).
Hi Pippit: Sorry you were terminated by Emory system. Also sorry about your inhumane treatment at the ER (Emory ER?) I also hope that you can get to the bottom of the diagnosis you are seeking to discover, including being able to go to the Cleveland clinic or the Mayo clinic. I can tell that your disease has gotten a lot worse. I am glad you have a personal assistant now .Does she take you to the grocery store? I hope so.
I was in relapse mode during our last excursion to the grocery store. Within 2 weeks I was hospitalized at Peachford for 12 days. I decided to apply for SSDI, for which I was approved the first time. Also received Medicare immediately without the 2 year wait. I am working part time at the Sage Hill Kroger near Emory and the Briarcliff Animal hospital. I must keep my gross pay below 810.00 a month. I now have a new therapist (PhD) in downtown Decatur. The sessions are weekly and the cost is free due to having Medicare. Still see Dr. Melieste. I am still lucky to have good health, but of course the older you get the more potential illnesses/diseases you are likely to get.
Write back if you feel like it. At the very least I would like to talk to you on the phone. 404-664-2585
I would love to hear from you. You probably won’t answer my e-mail, but I feel the strong need to applogize to you over our last car ride. I was becoming floridly psychotic and not in any shape to express the statements I said to you.