Patient Advocates Quotes

Personalized medicine is an art that advocates for the patient, not the pocket or convenience of the medical system.

Stop mansplaining menstrution, we’ve got this.

Here was the real reason, he thought, why big pharma could afford to be fickle about finding new drugs for schizophrenia—why decades come and go without anyone even finding new drug targets. These patients, he realized, can’t advocate for themselves.

- What do you expect? Think we were sent into the world to have a soft time and what is it? Float on flowery beds of ease? Think Man was just made to be happy? - Why not? Though I've never discovered anybody that knew what the deuce Man really was made for! - Well, we know not just in the Bible alone, but it stands to reason a man who doesn't buckle down and do his duty, even if it does bore him sometimes, is nothing but a... well, he's simply a weakling. Mollycoddle, in fact! And what do you advocate? Come down to cases! If a man is bored by his wife, do you seriously mean he has a right to chuck her and take a sneak, or even kill himself? - Good Lord, I don't know what 'rights' a man has! And I don't know the solution of boredom. If I did, I'd be the one philosopher that had the cure for living. But I do know that about ten times as many people find their lives dull, and unnecessarily dull, as ever admit it; and I do believe that if we busted out and admitted it sometimes, instead of being nice and patient and loyal for sixty years, and then nice and patient and dead for the rest of eternity, why, maybe, possibly, we might make life more fun.

They have been warehoused where nobody can really deal with them,” he said. Here was the real reason, he thought, why big pharma could afford to be fickle about finding new drugs for schizophrenia—why decades come and go without anyone even finding new drug targets. These patients, he realized, can’t advocate for themselves.

There, she identified a recurring cycle that kept women in a downward spiral: families that were already poor and struggling to stay alive kept having more babies, dragging them down still further. In the 1870s she became the country’s first advocate for contraception, and one of the first anywhere. In the midst of a society and a medical profession that were rigorously Victorian in their attitudes about sex, she had patients conduct trials of contraceptives and concluded that the pessary, a kind of diaphragm, was the most effective birth control device.

Diomedes kept talking as if she hadn’t spoken. He kept looking at me. “You think you can get her to talk?” Before I could reply, a voice said from behind me, “I believe he can, yes.” It was Indira. I’d almost forgotten she was there. I turned around. “And in a way,” Indira said, “Alicia has begun to talk. She’s communicating through Theo—he is her advocate. It’s already happening.” Diomedes nodded. He looked pensive for a moment. I knew what was on his mind—Alicia Berenson was a famous patient, and a powerful bargaining tool with the Trust. If we could make demonstrable progress with her, we’d have a much stronger hand in saving the Grove from closure.

We advocate for a transformation in medicine by returning to the fundamental partnership between physician and patient. We teach you that working toward a diagnosis is the one simple concept that will revolutionize your healthcare. The

I'm a good person. I eat pretty well. I work out. I go to bookstores. I save people. For a living. I have better things to do than get hauled in for a medical checkup every week. Have I complained the last few months? Constantly. Was I a good patient? No. What can I say? When your primary care provider is a shadowy government agency, you have to be your own medical advocate.

I remember March 24, 2017, with great clarity. The Republicans thought that they would repeal the ACA around the anniversary of the passage of the final legislation. But Democrats knew that Speaker Ryan didn't have the votes to pass the Republican bill, because outside groups and patient advocates were reporting to us that the Republicans were still desperately seeking votes in and outside of the chamber. As the AHCA was being debated, I told my members that I would seek recognition that the Speaker pull the bill from the floor. But before I could be recognized, Paul Ryan pulled his own bill - because he did not have the votes. One lesson in successful legislation that should be observed: the Speaker should only bring a bill to the floor when he has the votes - not simply on the anniversary of when I had the votes.

I hope that this book will be my way of helping to clear the fog of mystery surrounding autism. And in passing on my personal story I hope to include with it the best and most valuable of what I have learned along the way both as a mother and in my two decades working as a paediatrician. I also hope it will encourage healthcare professionals to be advocates for families who patiently and willingly endure battles every day for the sake of their children. My book describes a wide range of resources and therapies that can help families of children with special needs and autism

Ever wonder why so many children suffer peanut allergies today? What do you think happens when you inject peanut oil into the mammalian immune system and the body responds by turning on the peanut oil as if on terrorists? There is woeful reason why cutting edge doctors were advocating glutathione injections and lecithin supplementation for their patients. Cholesterol and phosphatidyl choline (lecithin) are used to make gobs to stick subunit particles on in the chase for another vaccine; did they make a "better or safer" vaccine? Problem is that these components are part of the body's matrix, specifically part of nerves, and therefore we are at risk of attack by our own immune system thanks to the researchers developing these weapons of mass destruction, weapons that will turn our own immune systems against ourselves.

If a woman does not comply, then she is the problem, the ‘feminist killjoy’, the Old Dragon, the Battleaxe, the Termagant, the Nippy Sweety, the Uppity Cow, the Bitch. I’ve come to understand all that, and also to understand that ableism works in the same way, that as an autistic person I am not supposed to make assertions that cause non-autistic people–parents of autistic children, autistic professionals–to feel bad about themselves. If, as an autistic person, I make a non-autistic person feel bad about themselves in relation to autism, it must be because I am a defective person, lacking both an adult understanding of my own condition and empathy for the individuals who are trying so patiently to cope with the consequences of it. I see this very argument–if I must dignify it with that word–used on social media again and again, whenever an autistic person seeks to advocate for autistic people as a group.

The Blue Mind Rx Statement Our wild waters provide vast cognitive, emotional, physical, psychological, social, and spiritual values for people from birth, through adolescence, adulthood, older age, and in death; wild waters provide a useful, widely available, and affordable range of treatments healthcare practitioners can incorporate into treatment plans. The world ocean and all waterways, including lakes, rivers, and wetlands (collectively, blue space), cover over 71% of our planet. Keeping them healthy, clean, accessible, and biodiverse is critical to human health and well-being. In addition to fostering more widely documented ecological, economic, and cultural diversities, our mental well-being, emotional diversity, and resiliency also rely on the global ecological integrity of our waters. Blue space gives us half of our oxygen, provides billions of people with jobs and food, holds the majority of Earth's biodiversity including species and ecosystems, drives climate and weather, regulates temperature, and is the sole source of hydration and hygiene for humanity throughout history. Neuroscientists and psychologists add that the ocean and wild waterways are a wellspring of happiness and relaxation, sociality and romance, peace and freedom, play and creativity, learning and memory, innovation and insight, elation and nostalgia, confidence and solitude, wonder and awe, empathy and compassion, reverence and beauty — and help manage trauma, anxiety, sleep, autism, addiction, fitness, attention/focus, stress, grief, PTSD, build personal resilience, and much more. Chronic stress and anxiety cause or intensify a range of physical and mental afflictions, including depression, ulcers, colitis, heart disease, and more. Being on, in, and near water can be among the most cost-effective ways of reducing stress and anxiety. We encourage healthcare professionals and advocates for the ocean, seas, lakes, and rivers to go deeper and incorporate the latest findings, research, and insights into their treatment plans, communications, reports, mission statements, strategies, grant proposals, media, exhibits, keynotes, and educational programs and to consider the following simple talking points: •Water is the essence of life: The ocean, healthy rivers, lakes, and wetlands are good for our minds and bodies. •Research shows that nature is therapeutic, promotes general health and well-being, and blue space in both urban and rural settings further enhances and broadens cognitive, emotional, psychological, social, physical, and spiritual benefits. •All people should have safe access to salubrious, wild, biodiverse waters for well-being, healing, and therapy. •Aquatic biodiversity has been directly correlated with the therapeutic potency of blue space. Immersive human interactions with healthy aquatic ecosystems can benefit both. •Wild waters can serve as medicine for caregivers, patient families, and all who are part of patients’ circles of support. •Realization of the full range and potential magnitude of ecological, economic, physical, intrinsic, and emotional values of wild places requires us to understand, appreciate, maintain, and improve the integrity and purity of one of our most vital of medicines — water.

Childbirth in the United States in the 1950s and 1960s was, like most of contemporary medicine, afflicted with patriarchal practices that made things easier for doctors but were not beneficial, and possibly were even harmful, to women. These included putting women under general anesthesia for labor and childbirth and banning fathers from the delivery room. Natural childbirth advocates questioned those practices and eventually pushed for their end. The contemporary patient experience is far better because of them.

For example, “Who is the type of person who could write a book?” It’s probably someone who is consistent and reliable. Now your focus shifts from writing a book (outcome-based) to being the type of person who is consistent and reliable (identity-based). This process can lead to beliefs like: “I’m the kind of teacher who stands up for her students.” “I’m the kind of doctor who gives each patient the time and empathy they need.” “I’m the kind of manager who advocates for her employees.

Thank you to Liz Davis, counselor advocate at Women’s Support Services in Sharon, Connecticut, who patiently answered my questions about sexual violence and about the varied nature of violence within relationships and marriages. She is reachable to any victim of violence at 860-634-1900.

It is not too much to require that what the wisest of mankind, those who are best entitled to trust their own judgment, find necessary to war- rant their relying on it, should be submitted to by that miscellaneous collection of a few wise and many foolish individuals, called the public. The most intolerant of churches, the Roman Catholic Church, even at the canonisation of a saint, admits, and listens patiently to, a “devil’s advocate.” The holiest of men, it appears, cannot be admitted to posthu- mous honours, until all that the devil could say against him is known and weighed. If even the Newtonian philosophy were not permitted to be questioned, mankind could not feel as complete assurance of its truth as they now do. The beliefs which we have most warrant for have no safeguard to rest on, but a standing invitation to the whole world to prove them unfounded. If the challenge is not accepted, or is accepted and the attempt fails, we are far enough from certainty still; but we have done the best that the existing state of human reason admits of; we have neglected nothing that could give the truth a chance of reaching us: if the lists are kept open, we may hope that if there be a better truth, it will be found when the human mind is capable of receiving it; and in the meantime we may rely on having attained such approach to truth as is possible in our own day. This is the amount of certainty attainable by a fallible being, and this the sole way of attaining it.

Innovations are happening in conventional schooling. Some people will read the chapters to come and respond that their own children’s schools are incorporating evidence-based changes, making them more like Montessori schools—eliminating grades, combining ages, using a lot of group work, and so on. One could take the view that over the years, conventional schooling has gradually been discovering and incorporating many of the principles that Dr. Montessori discovered in the first half of the 20th century. However, although schooling is changing, those changes are often relatively superficial. A professor of education might develop a new reading or math program that is then adopted with great fanfare by a few school systems, but the curricular change is minute relative to the entire curriculum, and the Lockean model of the child and the factory structure of the school environment still underlie most of the child’s school day and year. “Adding new ‘techniques’ to the classroom does not lead to the developmental of a coherent philosophy. For example, adding the technique of having children work in ‘co-operative learning’ teams is quite different than a system in which collaboration is inherent in the structure” (Rogoff, Turkanis, & Bartlett, 2001, p. 13). Although small changes are made reflecting newer research on how children learn, particularly in good neighborhood elementary schools, most of the time, in most U.S. schools, conventional structures predominate (Hiebert, 1999; McCaslin et al., 2006; NICHD, 2005; Stigler, Gallimore, & Hiebert, 2000), and observers rate most classes to be low in quality (Weiss, Pasley, Smith, Banilower, & Heck, 2003). Superficial insertions of research-supported methods do not penetrate the underlying models on which are schools are based. Deeper change, implementing more realistic models of the child and the school, is necessary to improve schooling. How can we know what those new models should be? As in medicine, where there have been increasing calls for using research results to inform patient treatments, education reform must more thoroughly and deeply implement what the evidence indicates will work best. This has been advocated repeatedly over the years, even by Thorndike. Certainly more and more researchers, educators, and policy makers are heeding the call to take an evidence-based stance on education. Yet the changes made thus far in response to these calls have not managed to address to the fundamental problems of the poor models. The time has come for rethinking education, making it evidence based from the ground up, beginning with the child and the conditions under which children thrive. Considered en masse, the evidence from psychological research suggests truly radical change is needed to provide children with a form of schooling that will optimize their social and cognitive development. A better form of schooling will change the Lockean model of the child and the factory structure on which our schools are built into something radically different and much better suited to how children actually learn.

Read—and possibly dispute—your medical bills. I know; I know. But they could contain costly mistakes. If you need help, the Patient Advocate Foundation (patientadvocate.org) can review your medical bills for free . . . and possibly help you bargain them down or resolve disputes.

Since I started telling my family story about my mother’s medical malpractice death, I learned about patient advocate principles: make a list of questions, bring a person to help support, ask for what I need. But even knowing all of this, having to insist on talking to my ob-gyn felt extremely uncomfortable.

Third, and perhaps most importantly, we need to try to detect cancer as early as possible so that our treatments can be deployed more effectively. I advocate early, aggressive, and broad screening for my patients—such as colonoscopy (or other colorectal cancer screening) at age forty, as opposed to the standard recommendation of forty-five or fifty—because the evidence is overwhelming that it’s much easier to deal with most cancers in their early stages. I am also cautiously optimistic about pairing these tried-and-true staples of cancer screening with emerging methods, such as “liquid biopsies,” which can detect trace amounts of cancer-cell DNA via a simple blood test.

Yes, we are taught to be patient advocates, but we are also taught to be a check on the doctor. The problem with that is we’re only taught to see docs as adversaries.” Nurses “never get a good understanding of the stresses and strains of what it’s like to be a physician.

As an antidote, Socrates advocated the regular, careful examination of our minds. He recommended systematically asking ourselves, ideally in the company of a patient and thoughtful friend, questions like: what are my priorities? What do I really fear? What do I truly want? Investigating and interpreting our thoughts and feelings was, and remains, the essence of what it means to be a philosopher.

Patient advocates are small in numbers, but giants in strength.

This is Maya’s house. She controls everything. She has every advantage. We are patients in Maya’s asylum, and all instruction to sit still and quiet the mind come directly from her. Stillness and silence are the antithesis of the awakening process, and those who advocate peace and compassion and a quiet mind are just reselling their preferred sleep potions.

Got Milk? For the record, you shouldn’t. I am not advocating for training your gut to handle lactose. We learned about the effect of animal protein and saturated fat on the gut in Chapter 2—less SCFA-producing bacteria, more inflammatory bacteria, increased TMAO production, increased intestinal permeability, and increases in bacterial endotoxin. As we’ve done in the past, when we examine the whole food rather than a sum of its parts, we find that dairy products have been associated with prostate cancer and Parkinson’s disease. Also the link to bone health turns out to be a myth—a prospective study of ninety-six thousand people over twenty-two years showed that milk consumption during teenage years did not protect against hip fracture later in life. In fact, men who drank more milk as a teenager actually had increased risk of hip fracture in the study. In a study of women in Sweden, high milk intake was associated with increased risk of bone fracture, heart disease, cancer, and premature death. One of the first things I do with my patients who have gas, bloating, or diarrhea is to eliminate dairy. You would not believe how many of them are cured just by doing this. Sorry, but milk doesn’t do a body good. The irony is that lactose, which has been vilified through the years as evil, is probably the most redeeming thing about dairy because lactose is actually a prebiotic and can have a beneficial effect on the gut microbiota.

The nurse cannot guarantee a physician’s care but can guarantee that the patient will not be left without an advocate.

in some old Teutonic and Scandinavian religions and mythologies there is an ideal of the “fated warrior.” This is the champion who heads into battle fully aware that doom awaits him at the end. “Defeat rather than victory is the mark of the true hero; the warrior goes out to meet his inevitable fate with open eyes.”14 Since making this discovery, I have thought often that this idealized picture resonates profoundly with the Christian story. One of the hardest-to-swallow, most countercultural, counterintuitive implications of the gospel is that bearing up under a difficult burden with patient perseverance is a good thing. The gospel actually advocates this kind of endurance as a daily “dying” for and with Jesus. While those in the grip of Christ’s love will never experience ultimate defeat, there is a profound sense in which we must face our struggles now knowing there may be no real relief this side of God’s new creation. We may wrestle with a particular weakness all our lives. But the call remains: go into battle. “There is much virtue in bearing up under a long, hard struggle,” a friend of mine once told me, even if there is no apparent “victory” in the short run. “Learning to weep, learning to keep vigil, learning to wait for the dawn. Perhaps this is what it means to be human,” someone has mused.15

Countering this view, confessing Christians seek to maintain the unity of the church through discipline, not through division. The confessing movement is strongly committed to staying WITHIN. It is better for churches to learn to respect their own legislative processes and discipline themselves accordingly than to face the even greater problems of separation, division of property, and the anguish of divorce. Confessing Christians seek to reform their churches, not leave them. Those who split off leave the patient in the hands of the euthanasia advocates, the Kevorkians of dying modernity. The Holy Spirit will not bless willful unnecessary divisiveness. If classic Christians self-righteously leave, they abandon the legacy, the patrimony, the bequests, the institutions, and the resources that have been many generations in the making with much tears and sweat. Walking away turns out to have weightier moral impediments than hanging in. IT SEEMS UNTHINKABLE TO ABANDON, WITHOUT FURTHER PRAYERS FOR SPECIAL GRACE, THOSE HISTORIC COMMUNIONS BY WHICH SO MANY HAVE BEEN BAPTIZED. The faithful have committed themselves for generations to the support of these communions which their classic doctrines and evangelical revivals have engendered. To allow these resources to be permanently taken over by those inimical to the faith cannot be an act of responsibility... ...To flee the church is not to discipline it. No one corrects a family by leaving it. Separation does not foster discipline. Discipline is fostered by patient trust, corrective love, and willingness to live with incremental change if that is what the Spirit is allowing. Discipline seeks to mend the broken church by a change of heart.