Prayer: Acquainted with the Night by Robert Frost (read by Jerie Green)
I have been one acquainted with the night.
I have walked out in rain-and back in rain.
I have outwalked the furthest city light.
I have looked down the saddest city lane.
I have passed by the watchman on his beat
And dropped my eyes, unwilling to explain.
I have stood still and stopped the sound of feet
When far away an interrupted cry
Came over houses from another street,
But not to call me back or say good-bye;
And further still at an unearthly height,
One luminary clock against the sky
Proclaimed the time was neither wrong nor right.
I have been one acquainted with the night.
Reading: Paternalism vs. Autonomy by Sarah Packer
The book Human Rights and Healthcare by Dr. Elizabeth Wicks, a Senior Lecturer of law at the University of Birmingham, England, discusses the inherent intersection between the topics in its title, and advocates for the necessity of human rights-based medical law. The book discusses national and international human rights laws and treaties and their application in serious ethical medical issues. Both because medical care is a necessity for all people and the intimate and invasive nature of medical procedures, individual autonomy comes to the forefront of any discussion of medical practice and law.
Intertwined in the right to autonomy is the issue of freely given and informed consent. Take assessing capacity to give or refuse consent to medical treatment. How does one determine if a patient has the ability to make their own decisions regarding their treatment? What counts as mentally incompetent, and how is that determined and applied?
Consider someone who wishes to make an irrational or unreasonable decision about their treatment. In her book, Dr. Elizabeth Wicks uses the real-life example of a schizophrenic man who refused to consent to an amputation even though he had gangrene in his foot. He was told by doctors amputation of the limb would be the only way to save his life.
Judging competence based on rationality is, in itself, irrational. "The exercise of autonomy does not, could not, need to be rational for we all make objectively irrational decisions on a daily basis" (73). The right to private life, protected by Article 8 in the European Convention on Human Rights, "does not imply that only objectively reasonable behaviour and choices will be protected but rather the fact of self-determination. Freedom to choose has at its core the freedom to choose wrongly. If it did not, it would be meaningless" (73) and there would be no choices at all.
The other problematic way to judge competency would be a status approach. A status approach "looks solely at the category of patient involved before determining the patient's capacity to consent. A patient suffering from a mental disorder would automatically and without exception be rendered incompetent to make treatment decisions" (73). As Dr. Elizabeth Wicks points out, this would violate the rights of the mentally disordered patient.
Thus, what is left is the process approach. The process approach holds that if a patient is "capable of understanding the issues involved in making a decision about treatment... he should not be prohibited from exercising his autonomy" (73).
Take C., the schizophrenic man who refused to have his foot amputated and was taken to court. C. satisfied the court's two requirements used to determine competency. The two requirements are "comprehending and retaining treatment information" (74) and "weighing it in the balance to arrive at a choice" (74). Despite refusing amputation being a seemingly irrational choice, proof of competency is not based on rationality but the ability to understand, retain, and balance treatment information.
In essence, inability to make a decision is defined as "unable to understand the information relevant to the decision." The "rightness" or "wrongness" of the decision in question is not taken into account, and in fact must not be in order to protect the existence of any liberty or autonomy at all for all human beings.
Minors and patients ruled incompetent by the above test must maintain individual rights, including but not limited to a right to individual integrity, privacy, and freedom from degrading, cruel, and abusive treatment. Doctors are therefore inherently trusted to act in patients' best interests. This too is a complex and controversial concept, as "best interests" can be considered to be fairly relative and differ in definition from one person to the next. Even believing doctors will act only in the best interests of their patients requires a perhaps idealistic set of expectations and creates a power imbalance that must be carefully and vigilantly monitored by human rights-law in order to protect and uphold the basic and inalienable human rights of patients.
"If the right to autonomy is to have any meaning at all, it must apply even in the most difficult of circumstances" (61). Non-consensual medical interventions done purely for paternalistic reasons are unlikely to be in accordance with international human rights laws.
In the book On Liberty, philosopher John Stuart Mill writes:
"The sole end for which mankind are warranted, individually or collectively in interfering with the liberty of action of any of their number, is self-protection. That the only purpose for which power can be rightfully exercised over any member of a civilized community, against his will, is to prevent harm to others. His own good, either physical or moral, is not a sufficient warrant."
Wicks, Elizabeth. Human Rights and Healthcare. Oxford: Hart Pub., 2007. Print.
"Introductory." On Liberty. 4th ed. London: Longman, Roberts, & Green, 1869. 3. Library of Economics and Liberty. Web. 01 June 2016.
Reading: Two Concepts of Liberty by Isaiah Berlin (read by Cathie Severance)
"I wish my life and decision to depend on myself, not on external forces of whatever kind. I wish to be the instrument of my own, not of other men's acts of will. I wish to be a subject, not an object; to be moved by reasons, by conscious purposes, which are my own, not by causes which affect me, as it were, from outside. I wish to be somebody, not anybody; a doer - deciding not being decided for, self-directed and not acted upon by external nature or by other men... I wish, above all, to be conscious of myself as a thinking, willing, active being, bearing responsibility for his choices and able to explain them by reference to his own ideas and purposes."
Sermon: Unheard Voices by Sarah Packer
"The inherent worth and dignity of every person." "Justice, equity and compassion in human relations." These are the first two Unitarian Universalist principles. Everyone applies these principles differently, which is necessary. I think life experience is what leads one to consider their own values. I think this is because values tend ultimately to be shaped. That's why those who've lived longer are considered wiser. There is, of course, a good deal of reflection. But you can't reflect on what you don't know. I am going to talk about the importance of these two principles' applications in regard to a topic with which I am familiar. A topic which, from what I've seen, is unfamiliar or unknown to many. So I'm going to share a life experience of mine which has shaped how I view the first two UU principles.
When I was 16, I was committed to a psychiatric hospital. I was assaulted by staff and put in solitary confinement. I was also a recipient of neglect. The hospital did an internal review of the incidents at the time and concluded that all protocol was followed appropriately. Since I have begun to explore what happened to me, I've discovered that the prevalence of abuse in psych hospitals and in health care settings in general is widely underestimated and largely untalked about. Googling "prevalence of abuse in psychiatric hospitals" takes me to statistics on patients who have a history of childhood abuse. There are no statistics on the commonality of abusive staff and practices in institutions.
In that case, how do I even begin to address this? To prove it exists? I've found that my story alone is dismissed on the basis of being anecdotal. To some, it's not indicative of a wider problem. In my search for some sort of objective evidence I came across a United Nations report on torture and other cruel, inhuman or degrading treatment or punishment in health care settings, written in 2013. In the report summary, it says this:
"The Special Rapporteur examines a number of the abusive practices commonly reported in health-care settings and describes how the torture and ill-treatment framework applies in this context. The examples of torture and ill-treatment in health settings discussed likely represent a small fraction of this global problem."
Also in the report, under section D, the UN rules that forced psychiatric interventions on the basis of disability are a form of torture or ill treatment. The UN calls for an absolute ban on restraints and seclusion as well as other non-consensual treatment, such as forced medication and electroshock procedures. All of the above have also been classified as torture or ill treatment.
Medical Daily, a medical news website, published an article in 2015 on a 900 page report from the state Department of Public Health that exposes physical, sexual, mental, and emotional abuse cases from five mental health institutes in California. The report also details 13 patient deaths since 2002, which occurred as a direct result of abuse, neglect, or lack of supervision. An example detailed in the article is of a 44 year old developmentally disabled patient who broke a rule by not staying where he was told. After returning to his room against instruction, an employee threw him to the ground, stomped on his back, and choked him into unconsciousness, causing the patient to go into cardiac arrest. The patient spent 11 days in an intensive care unit on a ventilator until he recovered, with shoe print-shaped bruises on his neck.
Wall of secrecy shields Florida's mental hospitals, an article published by the Miami Herald in 2015, details how a man named Luis Santana died in a state-funded mental hospital. It goes on to explain that under Florida law, the Department of Children and Families can withhold information about people who die in its care, so long as the agency decides no employees were to blame. The article also states that "[w]hen reporters asked for the names of hospital employees accused of abuse, state officials refused. [A Florida] law to protect the identity of victims and people who report abuse also covers the names of abusers. Like everyone else, mental patients have a legal right to keep their medical records private. But hospitals also use those privacy laws to make it harder to get information about unscrupulous or inept employees. Even parents can be denied information when their adult child is injured or killed in the state's care."
I've found that many people assume abuse in mental hospitals to be a thing of the past. It isn't. There exists, though, a very specific perception that can be applied to justify this sort of thing. I saw an eleven year old boy punished with sedation, restraints, and solitary confinement for breaking a nurse's glasses. What would justify punishing a child that way? Is it because he broke glasses and is therefore assumed to be violent? Is it because he was viewed as crazy? How would you treat your own child if they broke your glasses? What would be appropriate and what would overstep the line into abuse? How do you qualify or decide? What are your values? And can values be applied evenly? Whom do we choose to exclude from these values?
Whom do we choose to exclude?
In an article published under the Cleveland Clinic's Center for Continuing Education, titled Coping with Chronic Medical Illness, there is a table called "Personality Profiles and Reactions to Illness." It has been created to profile patients. Each section lists an individual's response to their chronic illness and associates that response with a psychiatric diagnosis. This article was written to educate doctors who work with patients with chronic physical illness.
The article states that a patient who "Asks lots of questions" is classified as "dependent." "Is detail oriented" is classified as "obsessive." "Criticizes others" is classified as "narcissistic." "Always has symptoms and requests much attention" is classified as "suffering victim." "Tends to avoid medical care" is classified as "schizoid."
How many of you, during a doctor's appointment for any sort of ailment or check up, have asked a lot of questions, wanted to know the details of your treatment, criticized or turned down a health plan you didn't like or were uncomfortable with, decided not to seek medical treatment, or conversely, had symptoms and decided to get medical attention? Congratulations, you fit into a personality profile for mental illness.
When my mom contested the way I was being treated in the psych hospital, the head psychiatrist diagnosed her with a personality disorder for disagreeing. When I was in too much pain due to my own chronic illness to go to group therapy during my stay, it was written in my records that I was too distressed over my pain to cooperate. The reality is that distress or any other emotion was not what was making me unable. It was the pain itself. Treating an illness is more important than enforcing cooperation.
Seeking out treatment is a right. So is refusing treatment. Asking questions is smart. What behaviours do we as a society choose to pathologize, and why? Why is getting the medical treatment you desire, and only the medical treatment you desire, not a human right?
In 1973, David Rosenhan, a psychologist, conducted something called The Rosenhan Experiment. In the first part of the study he sent healthy patients to different psychiatric hospitals across the United States. The participants briefly feigned auditory hallucinations in order to be admitted. After admission, the participants told staff they felt fine and were no longer experiencing any hallucinations. All participants were forced to admit to having a mental illness and had to agree to take antipsychotic drugs as a condition of their release. Their stays ranged from 7 to 52 days. All were discharged with a diagnosis of schizophrenia in remission even though they were healthy patients without mental illness.
This is quoted from an article on the Rosenhan Experiment, which cites the original study: "Despite constantly and openly taking extensive notes on the behavior of the staff and other patients, none of the participants were identified as impostors by the hospital staff, although many of the other psychiatric patients seemed to be able to correctly identify them as impostors.
" In the first three hospitalizations, 35 of the total 118 patients expressed a suspicion that the pseudopatients were sane, with some suggesting that the [pseudo]patients were researchers or journalists investigating the hospital. Hospital notes indicated that staff interpreted much of the pseudopatients' behavior in terms of mental illness. For example, one nurse labeled the note-taking of one pseudopatient as 'writing behavior' and considered it pathological. The patients' normal biographies were recast in hospital records along the lines of what was expected of schizophrenics by the then-dominant theories of its etiology.
"The experiment required the pseudopatients to get out of the hospital on their own by getting the hospital to release them. Once admitted and diagnosed, the pseudopatients were not able to obtain their release until they agreed with the psychiatrists that they were mentally ill and began taking antipsychotic medications. Rosenhan and the other pseudopatients reported an overwhelming sense of dehumanization, severe invasion of privacy, and boredom while hospitalized. A group of bored patients waiting outside the cafeteria for lunch were said by a doctor to be experiencing 'oral-acquisitive' psychiatric symptoms[, which in layman's terms means an obsession with eating.] Contact with doctors averaged 6.8 minutes per day."
For part two of the experiment, Rosenhan arranged with a well known research and teaching hospital "that during a three-month period, one or more pseudopatients would attempt to gain admission and the staff would rate every incoming patient as to the likelihood they were an impostor. Out of 193 patients, 41 were considered to be impostors and a further 42 were considered suspect. In reality, Rosenhan had sent no pseudopatients and all patients suspected as impostors by the hospital staff were ordinary patients."
How does all this tie into the first UU principles, "The inherent worth and dignity of every person" and "Justice, equity and compassion in human relations?" That is up to you to decide.
Going back to my own anecdotal experience, a lot of what I have spent wondering is why I have to prove that this is a widespread and prevalent problem. It is, but if it happened to just one person, that would be enough. It would still be enough to matter. That's what the UU principles mean to me.
"The Citizens Commission on Human Rights (CCHR) is a nonprofit mental health watchdog, responsible for helping to enact more than 150 laws protecting individuals from abusive or coercive practices. CCHR has long fought to restore basic inalienable human rights to the field of mental health, including, but not limited to, full informed consent regarding the medical legitimacy of psychiatric diagnosis, the risks of psychiatric treatments, the right to all available medical alternatives and the right to refuse any treatment considered harmful."
The CCHR's Mental Health Declaration of Human Rights includes:
"The right to be treated with dignity as a human being."
"The right to hospital amenities without distinction as to race, color, sex, language, religion, political opinion, social origin or status by right of birth or property. "
"The right to choose the kind or type of therapy to be employed, and the right to discuss this with a general practitioner, healer or minister of one's choice."
"The right to have all the side effects of any offered treatment made clear and understandable to the patient, in written form and in the patient's native language."
"The right to accept or refuse treatment."
"The right to make official complaints, without reprisal, to an independent board which is composed of nonpsychiatric personnel, lawyers and lay people. Complaints may encompass any torturous, cruel, inhuman or degrading treatment or punishment received while under psychiatric care."
"The right to have private counsel with a legal advisor and to take legal action."
"The right to discharge oneself at any time and to be discharged without restriction, having committed no offense."
"The right to see and possess one's hospital records and to take legal action with regard to any false information contained therein which may be damaging to one's reputation. "
"The right to sue psychiatrists, their associations and colleges, the institution, or staff for unlawful detention, false reports or damaging treatment."
Psychiatry is inherently an issue of ethics because it uses the assertion that minds can be diseased to justify coercion, overpowerment, and the disallowing of autonomy. It asserts that a person's mind can be too diseased to make decisions, decide for herself what she wants, or even know what's best for herself. Because of this, psychiatry inherently removes autonomy rather than giving it, and is a tool better suited for oppression than free will. Nothing will ever change until the feeling of justification is examined and removed.
When we as a society hear about abuse in nursing homes, or elder abuse, we feel horrified, but only because we see elder abuse as unjustified. If a child misbehaves and a parent hits him, that's justified with rationalizations about misbehaving. If a person is mentally ill or accused of being mentally ill and someone coerces, forces, and hurts them, that's rationalized based off the idea of what crazy means.
Section C of the United Nations report on torture and ill treatment in health care settings states:
"In all legal systems, capacity is a condition assigned to agents that exercise free will and choice and whose actions are attributed legal effects. Capacity is a rebuttable presumption; therefore, 'incapacity' has to be proven before a person can be designated as incapable of making decisions. Once a determination of incapacity is made, the person's expressed choices cease to be treated meaningfully. One of the core principles of the Convention on the Rights of Persons with Disabilities is 'respect for inherent dignity, individual autonomy including the freedom to make one's own choices, and independence of person' (art. 3 (a)). The Committee on the Rights of Persons with Disabilities has interpreted the core requirement of article 12 to be the replacement of substituted decision-making regimes by supported decision-making, which respects the person's autonomy, will and preferences."
"The Special Rapporteur on the right of everyone to the enjoyment of the highest attainable standard of physical and mental health observed that informed consent is not mere acceptance of a medical intervention, but a voluntary and sufficiently informed decision. Guaranteeing informed consent is a fundamental feature of respecting an individual's autonomy, self-determination and human dignity in an appropriate continuum of voluntary health-care services (A/64/272, para. 18)."
What's being said is a person has the right to ask lots of questions, to request much attention, to refuse treatment, to receive treatment, to want to know details of one's care, and to challenge or disagree freely and without threat, whether they are mentally ill, physically ill, a combination of both, or healthy. There should be no forced acquiescence to abusive treatment simply because you otherwise will be held against your will. A person's capacity to make decisions should be respected and pathologizing traits or behaviour is not a way to exert authority. First, do no harm.
This is my lived experience. This is me reflecting on what I know. I hope you now know it too. As you continue to expand and discover new ways to live the principles that are dear to your heart, I hope you find the campaign against psychiatric abuse something worth fighting for.
United Nations. General Assembly. Report of the Special Rapporteur on Torture and
Other Cruel, Inhuman or Degrading Treatment or Punishment. By Juan E.
Mendez. United Nations, 1 Feb. 2013. Web. 1 June 2016.
Olsen, Samantha. "California Mental Institutions' Physical, Mental, And Emotional Abuse, Published In Government Report." Medical Daily. N.p., 16 Apr. 2015. Web. 1 June 2016.
Anton, Leonora LaPeter, Michael Braga, and Anthony Cormier. "Wall of Secrecy Shields, Florida's Mental Hospitals." Miami Herald. Miami Herald, 3 Nov. 2015. Web. 01 June 2016.
Falcone, Tatiana, Leah Dickstein, Erin H. Sieke, and Kathleen N. Franco. "Coping with Chronic Medical Illness." Cleveland Clinic Center for Continuing Education. Cleveland Clinic, July 2014. Web. 01 June 2016.
"Rosenhan Experiment." Wikipedia. Wikimedia Foundation, Inc., n.d. Web. 1 June 2016.
"What Is the Citizens Commision on Human Rights?" Citizens Commission on Human Rights. Citizens Commission on Human Rights International, n.d. Web. 1 June 2016.
"Mental Health Declaration of Human Rights." Citizens Commission on Human Rights. Citizens Commission on Human Rights International, n.d. Web. 1 June 2016.
Benediction: Clearing Rain by Du Fu
The sky's water has fallen, and autumn clouds are thin,
The western wind has blown ten thousand li.
This morning's scene is good and fine,
Long rain has not harmed the land.
The row of willows begins to show green,
The pear tree on the hill has little red flowers.
A hujia pipe begins to play upstairs,
One goose flies high into the sky.