Patient Autonomy Quotes

The brain-disease model overlooks four fundamental truths: (1) our capacity to destroy one another is matched by our capacity to heal one another. Restoring relationships and community is central to restoring well-being; (2) language gives us the power to change ourselves and others by communicating our experiences, helping us to define what we know, and finding a common sense of meaning; (3) we have the ability to regulate our own physiology, including some of the so-called involuntary functions of the body and brain, through such basic activities as breathing, moving, and touching; and (4) we can change social conditions to create environments in which children and adults can feel safe and where they can thrive. When we ignore these quintessential dimensions of humanity, we deprive people of ways to heal from trauma and restore their autonomy. Being a patient, rather than a participant in one’s healing process, separates suffering people from their community and alienates them from an inner sense of self.

R. D. Laing, influenced heavily by Sartre and other existentialists, made the case in The Divided Self that schizophrenia was an act of self-preservation by a wounded soul [..] He believed patients retreat inside their own mind as a way of playing possum, to preserve their autonomy

What is odd, perhaps, is how the primacy of patient autonomy and informed consent over efficacy—which is what we’re talking about here—was presumed, but not actively discussed within the medical profession. Although the authoritative and paternalistic reassurance of the Victorian doctor who ‘blinds with science’ is a thing of the past in medicine, the success of the alternative therapy movement—whose practitioners mislead, mystify and blind their patients with sciencey-sounding ‘authoritative’ explanations, like the most patronising Victorian doctor imaginable—suggests that there may still be a market for that kind of approach.

I witnessed so much death and dying that first year, it was sometimes hard to take. Every death challenged me to clarify my value system. How much should I defer to a patient’s wishes regarding end-of-life care? How hard should I encourage him, as I had James Irey, to make what I thought were the right choices? How to balance a patient’s autonomy with the competing ethical imperatives of beneficence or social responsibility?

Autonomy is absolutized in principle and practice. This may lead to the second response, namely, that physicians will accede to whatever the patient or valid surrogate wants. This prompts the physician to transfer all responsibility to patients, family, or friends. This occurs with alarming frequency in the care of infants, the elderly, and demented patients who may be over- or under-treated because their surrogates demand it. Indeed,

The DID patient is a single person who experiences himself or herself as having separate alternate identities that have relative psychological autonomy from one another. At various times, these subjective identities may take executive control of the person’s body and behavior and/or influence his or her experience and behavior from “within.” Taken together, all of the alternate identities make up the identity or personality of the human being with DID. - Guidelines for Treating Dissociative Identity Disorder in Adults, Third Revision, p7

As Ernest Becker observes in The Denial of Death, the very thought of disobeying authority appears to awaken the anxiety connected with the possible loss, during infancy, of parental love, respect or support. The unexamined beliefs and experiences that generate our reliance on, and deference to authority, seem rooted in a profound existential uncertainty: the patient looks to the doctor to relieve this uncertainty, not only about not feeling well and not knowing why, but also about not knowing what to do, what action to undertake. In other words, the expertise of the physician relieves the patient of some of the burden of responsibility.

If you’re the dad of a daughter, your job is particularly important, affecting her self-esteem, her autonomy, and her aspirations (according to one study, out of the University of British Columbia, daughters who see their dads doing chores are less likely to limit their career aspirations to stereotypically female industries, like teaching or nursing). But you can’t just talk the talk, you have to actually walk it. We promise, it’ll pay off for you, too! Working dads who spend more time with their kids are happier in their jobs. They’re also more patient, empathetic, and flexible—and at least one study claims it might just help them live longer.

Moi qui ai eu la chance, malgré quelques grosses séquelles, de me relever et de retrouver une autonomie totale, je pense souvent à cette incroyable période de ma vie et surtout à tous mes compagnons d’infortune. À part Samia, peut-être, je sais pertinemment que les autres sont toujours dans leurfauteuil, qu’ils sont contraints à une assistance permanente, qu’ils ont toujours droit aux sondages urinaires, aux transferts, aux fauteuils-douches, aux séances de verticalisation… Ils sont pour toujours confrontés à ces mots qui ont été mon quotidien, cette année-là J’ai fait trois autres centres de rééducation par la suite, mais jamais je n’ai autant ressenti la violence de cette immersion dans le monde du handicap que lors de ces quelques mois. Jamais je n’ai retrouvé autant de malheur et autant d’envie de vivre réunis en un même lieu, jamais je n’ai croisé autant de souffrance et d’énergie, autant d’horreur et d’humour. Et jamais plus je n’ai ressenti autant d’intensité dans le rapport des êtres humains à l’incertitude de leur avenir .. Je ne connaissais rien de ce monde-là avant mon accident. Je me demande même si j’y avais déjà vraiment pensé. Bien sûr, cette expérience aussi difficile pour moi que pour mon entourage proche m’a beaucoup appris sur moi-même, sur la fragilité de l’existence (et celle des vertèbres cervicales). Personne d’autre ne sait mieux que moi aujourd’hui qu’une catastrophe n’arrive pas qu’aux autres, que la vie distribue ses drames sans regarder qui les mérite le plus . Mais, au-delà de ces lourds enseignements et de ces grandes considérations, ce qui me reste surtout de cette période, ce sont les visages et les regards que j’ai croisés dans ce centre. Ce sont les souvenirs de ces êtres qui, à l’heure où j’écris ces lignes, continuent chaque jour de mener un combat qu’ils n’ont jamais l’impression de gagner.Si cette épreuve m’a fait grandir et progresser, c’est surtout grâce aux rencontres qu’elle m’aura offertes.

Myth is also where the differences lie. Where Crusoe articulates a ‘foundation myth’ that shows Western Man asserting his autonomy and dominance as if from scratch, the Journal charts his encounter with a phenomenon he cannot understand or control. Crusoe celebrates the resourcefulness needed to create a world from new; the Journal, the endurance to watch it fall apart. For that reason it is arguably this book that among all Defoe’s works speaks most eloquently to early twenty-first-century readers attuned to imaginary landscapes of nuclear and environmental devastation, to grim fantasies of alien invasion, to the panic and policies that accompany epidemic disease... Turning an eye on the commercial and spiritual centre of empire rather than an island outpost, it dares to envisage London consumed not just by disease but violent self-interest that tears at the social fabric. It is that very modern phenomenon, an illness narrative, but one in which the patient is a whole city. Works inspired by it—Mary Shelley’s The Last Man, Albert Camus’s La Peste—do not so much dismantle its ideology as try to render afresh the uniquely disturbing impact. (David Roberts)

There were two main reasons that the name of this condition was changed from multiple was changed from multiple personality disorder to DID in the DSM-IV. The first was that the older term emphasized the concept of various personalities (as though different people inhabited the same body), whereas the current view is that DID patients experience a failure in the integration of aspects of their personality into a complex and multifaceted integrated identity. The International Society for the Study of Dissociation (1997) states it this way: "The DID patient is a single person who experiences himself/herself as having separate parts of the mind that function with some autonomy. The patient is not a collection of separate people sharing the same body." ͏

Those are the conditions that Sharp honored in calling for volunteers to join “action teams” to improve the patient experience. The work was meaningful: serving patients better. The teams were given autonomy, often entrusted to formulate the health system’s policies in a certain domain. Participation was voluntary. And volunteer they did: 1,600 people came forward. A mass movement of people willing to struggle together. If you want to be part of a group that bonds like cement, take on a really demanding task that’s deeply meaningful. All of you will remember it for the rest of your lives.

8. Chapter 4 describes the birth of the assisted-living facility concept (Park Place), designed by Keren Wilson to provide her disabled mother, Jessie, with caregivers who would not restrict her freedom. Key components included having her own thermostat, her own schedule, her own furniture, and a lock on the door. What does it mean to you to treat someone with serious illness as a person and not a patient? 9. In 1980, an eighty-year-old man named Harry Truman refused to move from his home as Mount St. Helens began to erupt. He told authorities that at eighty years old he had a right to decide his fate. Do you agree? What are the implications for individuals and families when elder adults are given full autonomy over their lives?

First, I am thrilled that paramedics are finally getting the respect they deserve for being the professionals they can be. The scope of practice is expanding, and patient care modalities are improving, seemingly by the minute. Patient outcomes are also improving as a result, and EMS is passing through puberty and forging into adulthood. On the other hand, autonomy in the hands of the “lesser-motivated,” can be a very dangerous thing. You know as well as I do that there are still plenty of providers who operate from a subjective, complacent, and downright lazy place. Combined with the ever-expanding autonomy, that provider just became more dangerous than he or she ever has been – to the patients and to you. Autonomy in patient care places more pressure for excellence on the provider charged with delivering it, and also on the partner and crew members on scene. Since the base hospital is not involved like it once was, they are likewise less responsible for the errors and omissions of the medics on the scene. Now more than ever, crew members are being held to answer for the mistakes and follies of their coworkers; now more than ever, EMS providers are working without a net. What’s next? I predict (and hope) emergency medical Darwinism is going to force some painful and necessary changes. First, increasing autonomy is going to result in the better and best providing superior patient care. More personal ownership of the results is going to manifest in outcomes such as increased cardiac arrest survival rates, faster and more complete stroke recovery, and significantly better outcomes for STEMI patients, all leading to the brass ring: EMS as a profession, not just a job. On the flip side of that coin, you will see consequences for the not-so-good and completely awful providers. There will be higher instances of licensure action, internal discipline, and wash-out. Unfortunately, all those things will stem from generally preventable negative patient outcomes. The danger for the better provider will be in the penumbra; the murky, gray area of time when providers are self-categorizing. Specifically, the better provider who is aware of the dangerously poor provider but does nothing to fix or flush him or her, is almost certain to be caught up in a bad situation caused by sloppy, complacent, or ultimately negligent patient care that should have been corrected or stopped. The answer is as simple as it is difficult. If you are reading this, it is more likely because you are one of the better, more committed, more professional providers. This transition is up to you. You must dig deep and find the strength necessary to face the issue and force the change; you have to demand more from yourself and from those around you. You must have the willingness to help those providers who want it – and respond to those who need it, but don’t want it – with tough love by showing them the door. In the end, EMS will only ever be as good as you make it. If you lay silent through its evolution, you forfeit the right to complain when it crumbles around you.

Abortion is one of the most commonly performed medical procedures in the United States, and it is tragic that many women who have abortions are all too often mischaracterized and stigmatized, their exercise of moral agency sullied. Their judgment is publicly and forcefully second-guessed by those in politics and religion who have no business entering the deliberation. The reality is that women demonstrate forethought and care; talk to them the way clergy do and witness their sense of responsibility. Women take abortion as seriously as any of us takes any health-care procedure. They understand the life-altering obligations of parenthood and family life. They worry over their ability to provide for a child, the impact on work, school, the children they already have, or caring for other dependents. Perhaps the woman is unable to be a single parent or is having problems with a husband or partner or other kids.2 Maybe her contraception failed her. Maybe when it came to having sex she didn’t have much choice. Maybe this pregnancy will threaten her health, making adoption an untenable option. Or perhaps a wanted pregnancy takes a bad turn and she decides on abortion. It’s pretty complicated. It’s her business to decide on the outcome of her pregnancy—not ours to intervene, to blame, or to punish. Clergy know about moral agency through pastoral work. Women and families invite us into their lives to listen, reflect, offer sympathy, prayer, or comfort. But when it comes to giving advice, we recognize that we are not the ones to live with the outcome; the patient faces the consequences. The woman bears the medical risk of a pregnancy and has to live with the results. Her determination of the medical, spiritual, and ethical dimensions holds sway. The status of her fetus, when she thinks life begins, and all the other complications are hers alone to consider. Many women know right away when a pregnancy must end or continue. Some need to think about it. Whatever a woman decides, she needs to be able to get good quality medical care and emotional and spiritual support as she works toward the outcome she seeks; she figures it out. That’s all part of “moral agency.” No one is denying that her fetus has a moral standing. We are affirming that her moral standing is higher; she comes first. Her deliberations, her considerations have priority. The patient must be the one to arrive at a conclusion and act upon it. As a rabbi, I tell people what the Jewish tradition says and describe the variety of options within the faith. They study, deliberate, conclude, and act. I cannot force them to think or do differently. People come to their decisions in their own way. People who believe the decision is up to the woman are typically called “pro-choice.” “Choice” echoes what is called “moral agency,” “conscience,” “informed will,” or “personal autonomy”—spiritually or religiously. I favor the term “informed will” because it captures the idea that we learn and decide: First, inform the will. Then exercise conscience. In Reform Judaism, for instance, an individual demonstrates “informed will” in approaching and deciding about traditional dietary rules—in a fluid process of study of traditional teaching, consideration of the personal significance of that teaching, arriving at a conclusion, and taking action. Unitarian Universalists tell me that the search for truth and meaning leads to the exercise of conscience. We witness moral agency when a member of a faith community interprets faith teachings in light of historical religious understandings and personal conscience. I know that some religious people don’t do

In fact, the Nazis did not have a euthanasia program, in the proper sense of the word. Their so-called euthanasia program was not motivated by concern for the suffering of those killed. If it had been, they would not have kept their operations secret, deceived relatives about the cause of death of those killed, or exempted from the program certain privileged classes, such as veterans of the armed services or relatives of the euthanasia staff. Nazi ‘euthanasia’ was never voluntary and often was involuntary rather than nonvoluntary. ‘Doing away with useless mouths’ – a phrase used by those in charge – gives a better idea of the objectives of the program than ‘mercy-killing’. Both racial origin and ability to work were among the factors considered in the selection of patients to be killed. It was the Nazi belief in the importance of maintaining a pure Aryan Volk – a quasi-mystical racist concept that was thought of as more important than mere individuals’ lives – that made both the so-called euthanasia program and later the entire holocaust possible. Proposals for the legalization of euthanasia, on the other hand, are based on respect for autonomy and the goal of avoiding pointless suffering.

For the schizoid individual direct participation 'in' life is felt as being at the constant risk of being destroyed by life, for the self's isolation is, as we said, its effort to preserve itself in the absence of an assured sense of autonomy and integrity. [..] In the absence of a spontaneous natural, creative, relationship with the world which is free from anxiety, the 'inner self thus develops an overall sense of inner impoverishment, which is expressed in complaints of the emptiness, deadness, coldness, dryness, impotence, desolation, worthlessness, of the inner life. For instance, one presenting complaint was of the impoverishment of the imaginative and emotional life. The patient explained that he regarded this as a consequence of his own decision to shut himself out from reality. As a result, as he put it, he was getting no supplies from reality to enrich his imagination.[The inner self in the schizoid condition]

The brain-disease model overlooks four fundamental truths: (1) our capacity to destroy one another is matched by our capacity to heal one another. Restoring relationships and community is central to restoring well-being; (2) language gives us the power to change ourselves and others by communicating our experiences, helping us to define what we know, and finding a common sense of meaning; (3) we have the ability to regulate our own physiology, including some of the so-called involuntary functions of the body and brain, through such basic activities as breathing, moving, and touching; and (4) we can change social conditions to create environments in which children and adults can feel safe and where they can thrive. When we ignore these quintessential dimensions of humanity, we deprive people of ways to heal from trauma and restore their autonomy. Being a patient, rather than a participant in one’s healing process, separates suffering people from their community and alienates them from an inner sense of self. Given the limitations of drugs, I started to wonder if we could find more natural ways to help people deal with their post-traumatic responses

Starmer has found it difficult to escape this cycle of dependence because he cannot comprehend a crucial therapeutic insight: that the subject supposed to know knows nothing. Often, an analytic breakthrough comes when the patient realises that the Other to whom she has delegated her authority (or knowledge, or desire) is illusory: an empty signifier. This revelation allows her to take responsibility for her own desire, which is thereby transformed from a conduit for the Other’s will into what Lacan calls ‘decided desire’ or ‘determined desire’. When her experience is no longer mediated by the subject supposed to know, its possibilities are expanded. Dependence is supplanted by autonomy. And that, for Lacanians, is the real meaning of adulthood, although most adults never achieve it.

The brain-disease model overlooks four fundamental truths: (1) our capacity to destroy one another is matched by our capacity to heal one another. Restoring relationships and community is central to restoring well-being; (2) language gives us the power to change ourselves and others by communicating our experiences, helping us to define what we know, and finding a common sense of meaning; (3) we have the ability to regulate our own physiology, including some of the so-called involuntary functions of the body and brain, through such basic activities as breathing, moving, and touching; and (4) we can change social conditions to create environments in which children and adults can feel safe and where they can thrive. When we ignore these quintessential dimensions of humanity, we deprive people of ways to heal from trauma and restore their autonomy. Being a patient, rather than a participant in one’s healing process, separates suffering people from their community and alienates them from an inner sense of self.

The practice of euthanasia, under some circumstances, is morally required by the two most widely regarded principles that guide medical practice: respect for patient autonomy and promoting patient’s best interests. In the Netherlands and Belgium active euthanasia may be carried out within the law.

When we ignore these quintessential dimensions of humanity, we deprive people of ways to heal from trauma and restore their autonomy. Being a patient, rather than a participant in one’s healing process, separates suffering people from their community and alienates them from an inner sense of self.

Hence, Bruch, like Bateman and Fonagy, stressed the necessity of tailoring interventions to the patients’ way of psychological functioning (Skårderud and Fonagy 2012). In her posthumously published book Conversations with Anorexics (1988: 8), she writes: The therapeutic task is to help the anorexic patient in her search for autonomy and self-directed identity by evoking awareness of impulses, feelings, and needs that originate within herself. The therapeutic focus needs to be on her failure in self-experience, on her defective tools and concepts for organizing and expressing needs, and on her bewilderment when dealing with others. Therapy represents an attempt to repair the conceptual defects and distortions, the deep-seated sense of dissatisfaction and helplessness, and the conviction that her own self is empty and incomplete and that therefore she is condemned to compliance out of helplessness. Again, she called this a naïve stance.

Most DID patients are rather muted compared to those cases incorrectly assumed to epitomize the condition (Kluft, 1985b). The personalities enact adaptational patterns and strategies that developed in the service of defense and survival. Once this pattern, which disposes of upsetting material and pressures rapidly and efficiently, is established, it may be repeated again and again to cope with both further overwhelming experiences and more mundane developmental and adaptational issues. Once the DID that developed in order to cope with intolerable childhood circumstances has achieved some degree of secondary autonomy, it becomes increasingly maladaptive.