Inpatients Being Deprived of Their Nonhealth Choices in Life is Our Loss

By Nick Levinson

Nursing homes can be depressingly terrible even with stellar health care. So can any other inpatient facility one can’t leave, such as hospices and hospitals (I don’t know about assisted-living homes and home nursing services, round-the-clock or less). Nursing homes are almost entirely for people who will never leave (unlike hospitals with exceptions) and yet have not resigned themselves to dying within days (unlike hospices). And, to the patient, enveloping their own situation, a hospital or a hospice may be just as awful. If we enter, they deprive us of most of our autonomy, and keep us deprived unless we can leave. They undermine most of the reason for living. TV shows selected by a community and an hour of checkers are not life-long thrills for most people. Patients spend most of their time being told what to do or waiting to be told what to do.

Autonomy is what we thrive on. Except when we’re children, we generally know enough, have enough resources, and agree to enough self-responsibility to be autonomous and at least survive; and, on that foundation, we typically learn to thrive, and thrive we do for most of adulthood. Entire societies operate on large measures of individual autonomy. Societies thrive because of individual autonomy. The Earth’s entire population is thriving, considering that it lives steadily on most land and is huge only because it has developed and maintains highly complex and cooperative ways of acquiring and consuming more resources than are needed for the survival of the current generation and at least the next generation without exhausting the capacity for future generations’ survival. Within the global population, some societies encourage more individual autonomy than other societies do, but all societies encourage some. So, autonomy is a functional necessity for almost all adults.

We deprive three groups of people of autonomy. The society deprives children, because they’re incapable of applying autonomy even moderately well except within a scope so narrow that it is too lttle for overall survival. Adolescents are in some ways children and in some ways adults; gaining autonomy through childhood into adulthood is a gradual process.

Among all people with autonomy, what some do is societally deemed so bad that the society decides to expend some of its resources on depriving them of most of their autonomy until either their death or they are trusted with more autonomy again. If what they do that is so bad is because they choose to do it, they are deemed to be criminals. Otherwise (i.e., absent choice), they are deemed to be psychologically impaired, theologically under evil control (e.g., possessed by the devil), and/or medically ill, contagious, and/or disabled by injury.

While we are generally angriest at and fearful of the criminals, we are less angry or not angry at all at but still fearful of the others when they are as autonomous as most adults. Thus, we decide to go to extraordinary lengths to control them against more bad acts.

Nursing homes reflect this. In the U.S., generally, inpatient facilities are held legally responsible for doing the best they can for the health of the patients. The psychological state is considered mental health and therefore part of health, so the inpatient facilities are held legally responsible for doing the best they can for the mental or psychological health of the patients. Mental illness is often defined in law as a ‘tendency to do harm to self or others’, and doing anything unlawful and for which a penalty is possible could be doing harm to self or others, so that inpatient facilities are legally required to prevent their inpatients from doing anything unlawful for which a penalty is possible, and maybe even if there’s no penalty, since presumably there’d still be legal harm to someone else or there wouldn’t have been the law.

Running a business, even a small one entirely owned by the inpatient and which the inpatient has been successfully running alone for decades without ever being sued, has that risk. Suppose she sells small items by mail order and receives an order with a confusing letter and a check paying for it; she decides to cash the check and not send the merchandise; and the customer sues. If that happened at her home and even if her home was a very expensive apartment in a building with a building staff who daily brought her her mail and who took her outgoing mail away for pickup by the Postal Service, the lawsuit would be against her and not against building management. But if it happened while she was an inpatient in a health facility, where she likely had access to little or none of her money with which to pay a judgment, the lawsuit would lie against the facility, which has deeper pockets, for failing to prevent her from committing harm to another, namely her complaining customer. To prevent that lawsuit, an easy way is to prevent inpatients from running businesses, even small ones of any kind. So they do. They tell her she can ask her family to manage the business for her.

Maybe she’s an artist. She doesn’t want art therapy, which tends to be guided, to favor the production of art the therapist prefers and is expensive due to the supervision and limited to the times when supervision is available. She just likes to paint, sculpt, write music, or whatever is her specialty and she knows what she wants to create, no bosses needed. All her supplies fit into a box that fits under her bed. One night, she leaves the box partly under the bed but partly not quite under it. A nurse trips over it, is injured, and sues. The suit would be against the hospital for an occupational safety hazard. To prevent that suit, an easy way is to limit what physical property an inpatient may keep near her, even in her own room, limiting it so much that almost no occupational safety hazard is possible. Perhaps she can keep a picture on a wall, a hospital gown, and a towel. Her art supplies box goes into a closet, like it or not. She can tell her family to take her supplies home for her.

This may be betrayal. Maybe during the negotiations for her admission, the facility’s representatives, one of whom may have been a nurse in a nurse’s uniform, assured the prospective patient and her family that they have other patients like her and they already know how to accommodate those needs. That sounds good, but then the written contract gets signed or there’s no admission. The contract replaces verbal promises with the content of the written contract. The contract says that there’s no verbal promise except what’s written in the contract and that the health facility will take care of the patient’s health in accordance with law, which is what the signatories want. Within an hour or so of the signing, the business supplies and the art supplies are taken away with the respective explanations.

General communications problems prevail, probably nationwide. Maybe the most common is the same as between any vendor and any buyer: the vendor wants to sell much more than the buyer wants to consume or wants to (or can) pay for, in this case with the argument by the vendor that this is for your health and that’s the most important thing you have. Maybe; but economics and socialization are examples of what can be more important to someone. Another results from the uniquely high amount of education required before full licensure for practicing, even if the doctor is not very good (doctors whose published research is frequently in major peer-reviewed journals, even in geriatrics, might not be primarily affiliated proportionately often with nursing homes, research doctors being likely to earn higher salaries elsewhere such as in professorships or pharmaceutical company labs but if working in nursing homes they’d be unlikely to generate high enough earnings for the nursing homes), and that is the belief that the patient is health-wise a moron, preferably a blank slate (students who are blank slates with fulfilled prerequisites tend to be preferred by teachers and doctors may be replicating that expectation with their patients). If the patient is a blank slate, telling the patient what to do is easier and the patient shouldn’t resist what was told. The result of that is, often, miscommunication and a dismissal by the patient (such as a “thank you” with only limited meaning in the context, that being politeness, not agreement) and a tendency for the doctor to ignore what the patient says.

Failure to persuade is often the state at this stage, so next is that a motive is offered to the patient, the patient disagrees, and the disagreement is either ignored or treated as a symptom of a condition. The motive offered may have been offered to distract from a more realistic motive. Thus, a proposed treatment may be described as beneficial to the patient; it may be that but with a tradeoff the patient rejects, yet other reasons for the treatment may not be stated by the provider, such as business interests (many doctors being in for-profit businesses as doctors), an unawareness (perhaps due to not being included in professional training) of some other treatments (e.g., nonprescription) that would achieve the same objective with less adversity, or, particularly in psychology, a practitioner’s belief that an objection by the patient is really an excuse or proxy for the patient resisting necessary treatment. A risk of the facility being sued is rarely likely to be cited to a patient, because of an institutional fear that patients will get ideas they wouldn’t otherwise have gotten and more lawsuits will ensue. Therefore, some other motive will be offered, a motive less likely to be adversely consequential to the facility.

Delegation is another time-honored technique. The doctor utters; the patient disagrees; the doctor walks away. The doctor is too busy for nonsense like a patient disagreeing. In just a little time, a nurse or social worker and maybe a security guard show up with the mission of gaining the patient’s compliance. The nurse or social worker is paid to agree with the doctor and the patient’s complaint therefore falls on deaf ears. If the patient hesitates to accept a drug or a device, she’s told the drug or device is her “friend”. (And we wonder why some people become what we call drug addicts, but I digress.) The patient’s disagreement does not get reported to the doctor except as an obstacle that the staff overcame. The staff has been told that no patient knows enough to disagree and therefore the staff, who understands health and the doctor, is always right.

You remember the store where the slogan was “the customer is always wrong”? Oh, you don’t remember it? Guess it went out of business.

The healthcare facility is very much in business, and it has more tricks up its sleeve. If the patient objects too vigorously, there are methods under the rubric of patient management that reduce the burden on the staff of hearing her objections. The staff is paid essentially by the doctor, not by the patient, and the doctor hiring the staff expects the staff to understand that the doctor is paying the staff. The simplest and cheapest way to respond to the patient’s complaint may be to describe her to the staff as cranky. Cranky people tend to get ignored. If that doesn’t work, like if she cranks up her objections and gets louder, she can be drugged with a sedative. They’re very effective and can be represcribed, probably throughout each day for the rest of her life. If the doctor is too busy, it turns out that some doctors have, in the past, authorized selected nonphysician staff to prescribe over a doctor’s pre-supplied signature. I assume that’s against the law but if the doctor and the nondoctor are careful the doctor will be able to back up every prescription in court as the doctor’s own, and no one need be any the wiser. So people who are not doctors might prescribe. The staff may do little for you. When the law is not much help, a patient may not have a friend in court.

It can be protested that doctors know what they’re doing and that all of the patients are very sick, none being admitted just on a lark, when involuntarily admitting just anyone could get a facility closed for good. Speaking precisely, that would be true, but there is a significant incidence of admissions based on familial kidnappings or exaggerated claims of ill health offered by other people willing to pay or facilitate payment, such as people whose lives would be more convenient without the prospective patient being around (a problem to which the prospective patient may have contributed by claiming an entitlement to being taken care of by family or perhaps others, such as in reciprocation for care given earlier in the other direction).

It might also be protested that whatever is wanted can probably be provided. One need ask for it; but it can be done. Your wish is our command. However, expenses for living in these facilities even with only minor medical issues is almost always high. Adding special requests adds to the enormity of the bills. In the cases of legal liability, a facility can accept the liability, perhaps buying insurance for it, and the patient or other payor can agree to indemnify the facility against any liability. But only wealthy people can agree to that and have it accepted as sufficient by a facility. A person of more modest means, meaning most of us, might execute such a waiver but the lawsuits could still lie against the facility with little or no ability to collect damages from the patient or contract signers.

A solution may lie in law reform but I’m not clear what reform would accomplish that without denying reasonable responsibility for doctors to do the best they can for their patients. I would legally treat psychological services as just that and not call most of psychology part of health, because most of it, at least as expressed clinically, does not depend on damage to the brain in ways affecting the judgments coming from the brain (as can happen with Alzheimer’s during nonlucidity and with brain tumors but not with chemistry changes associated with so-called drug addiction, since the same changes occur with falling in love and probably with major successes in school and business and we don’t lock up people because of those histories, addiction thus being a social and nonmedical judgment). I would likely redefine harm to self or others more narrowly, to reduce abuse of that standard. I’d likely forbid arbitration, because that’s likely based on inequality with the facility having the upper hand by far. And I’d likely require occasional visits by people to visit every patient on behalf of a legal institution to see if they need access to a lawyer and a court or to a police officer because of a complaint they might have, without health personnel even being present to overhear what the patient says and interfere (patients could already complain to staff, for whatever good that might do); the legal visitors should publish anonymized data on their access and results.

Exiting being in care should definitely be easier. Many facilities seem to believe that discharge, especially against medical advice, is possible only if someone else agrees to absorb responsibility for care, sometimes only if one of a very few individuals accept that responsibility. The individual is not allowed to take that responsibility for themself unless they can gain access to a court, which these facilities often resist, supposedly in the name of health. Discharge planning should be scheduled at a patient’s request and subject to a time limit, in order to drive the facility to complete everything needed or beneficial for discharge in a reasonable time frame.

More patients at the margins of admissibility to these facilities and who don’t want admission should be afforded more support for staying at home, or in another home, that is not one of these facilities. For instance, by now someone must have invented a stove that is safer for people who want to nap while cooking (some cooking is slow). Amtrak redesigned its train engineer cabs decades ago so that an engineer is required to adjust a control or touch an otherwise-meaningless panel every twenty seconds. It didn’t matter what the engineer adjusted or touched as long as it was something once every 20 seconds or less. If the engineer didn’t do it, a loud alarm sounded. If the engineer still didn’t do it, the train stopped. The engineer could restart the train but doing so required going outside and, at a train terminal, a supervisor would ask why a restart was necessary. The engineer also had to hold to a certain body posture range, so a beam would not get past; if the engineer slumped, such as from a heart attack, the beam would signal a receiver and cause the train to stop. That could be a model for a stove and an oven, conventional or microwave. Similarly-driven safety improvements to other home equipment and to homes per se are likely affordable.

Self-awareness may be hard to teach but has huge dividends. Self-care is easier with self-awareness. Both keep someone out of these facilities and increase autonomy. In several Google searches, I was unable to find much about patient self-awareness among medical patients, although there was material about it in psychology or among medical doctors. The concept is not unfamiliar but possibly has yet be recognized for application as a skill to be encouraged by medical practitioners among patients .

Compensation for patients’ services (including providing goods) should be payable to patients earning it even though they’re in treatment, but inpatients are almost never allowed compensation. The model that health care providers should exclude patients from employment and business relationships has been abused into either requiring that patients serve for free, which is slavery if they are not free to leave, or that patients not be allowed to do anything that could be what other people are compensated to do, virtually guaranteeing that patients will be useless to everyone in the world.

Along with allowing compensation, patients should be free to market their services outside of the facility, to acquire as needed in order to deliver and then to deliver their services, and, in general, to manage their own businesses, including their own communications, legal state, and finances. There can be limits for compatibility with the facility (such as against toxic fumes or testing a pile driver in the facility’s parking lot); but the present-day argument for such compatibility leads to a too-stringent restraint on what patients may do, so it needs to be loosened, with the patient being allowed to go off the premises to fulfill such interests and still return for care.

The problem of reduction of autonomy, essentially terminal reduction of autonomy, is major and is masked by failures to communicate. One result is a focus on an older person who is hugely resistant to confinement in a nursing home to the point of considering suicide, assisted suicide, dying by other means, or a preference of poverty (so no one could find assets with which to pay for nursing home care) as a way out of the anticipated terminal misery, with the resistance, in the view of others, being due to misbeliefs and unjustified. Yet the resistance is widespread and should be accepted as worthy of credit and some kind of reform should be applied. This could preserve more autonomy than is presently preserved, and this could be partly channeled into societal benefit exchanged for personal benefit, so that both gain.

Most people who have retired have something to contribute. Many would like to engage with the world. Let them.